Re: [QUAD-L] 16 Years
Congratulations Nicky on exceeding years after being paralyzed from your Olympic dive. Thanks for telling us. As I did not know the cause of your injur y. I somehow missed that information. It was 40 years. Let me July 26, 2014. I am C 4-5 complete. Dana, how did you celebrate this day? In a message dated 6/28/2014 11:59:02 A.M. Central Daylight Time, bobbiehumphre...@gmail.com writes: Go out with friends or family. Bobbie Smile Everyday On Jun 27, 2014, at 6:57 PM, nichole rohling _zoocrew1@windstream.net_ (mailto:zoocr...@windstream.net) wrote: 16 years ago today was my olympic dive that changed my life forever – time flies! Nicki c5/6 =
[QUAD-L] Re: Take Action Next Week To Fix Medicare In 2014
In a message dated 6/28/2014 1:29:42 P.M. Central Daylight Time, re...@patientsactionnetwork.com writes: You are receiving this email because you subscribed to the Patients' Action Network. Not interested anymore? _Unsubscribe_ (https://www.votervoice.net/link/clickthrough/int/JFEb28zbb/374019.aspx) . Next week members of Congress will be home for their July 4 break to meet with, and listen to, their constituents. This is a great opportunity for you to remind them about unfinished work on important health care issues that will affect patients' access to critical care this year and beyond. This Congress, lawmakers have taken serious steps toward repealing Medicare's flawed sustainable growth rate (SGR) formula. This formula is hurting physicians and patients by annually threatening payment cuts that will impact a patients' choice of physician and access to the care that they need. Unfortunately, this bipartisan legislation has stalled. We need you to remind Congress how important passing a permanent SGR repeal is to protect and preserve our Medicare system! _Send an email_ (https://www.votervoice.net/link/target/pan/JFEb28zbb.aspx) , or call Congress today at (888) 434-6200. You will be connected with the district office for your representative and senators. Urge your lawmakers to continue working in a bipartisan manner to protect Medicare and seniors' choice of physician by repealing the flawed Medicare SGR formula this year. The current Medicare system is broken. Real reform that will transform the program into an effective, 21st-century model of care is achievable this year, but it cannot be built on the crumbling foundation of Medicare's SGR formula. Take advantage of this time when your members of Congress are back at home: _Email_ (https://www.votervoice.net/link/target/pan/JFEb28zbb.aspx) or call (888) 434-6200 to be connected with their district offices and tell them to continue working together to repeal the SGR. Take Action Want to contact Congress? _Send an email_ (https://www.votervoice.net/link/clickthrough/ext/374020.aspx) or call toll-free at (888) 434-6200. Connect with us (https://www.votervoice.net/link/clickthrough/ext/374021.aspx) (https://www.votervoice.net/link/clickthrough/ext/374022.aspx) (https://www.votervoice.net/link/clickthrough/ext/374023.aspx) (https://www.votervoice.net/link/clickthrough/ext/374024.aspx) (https://www.votervoice.net/link/clickthrough/ext/374025.aspx) Learn about the issues * _Medicare_ (https://www.votervoice.net/link/clickthrough/ext/374026.aspx) * _Liability Reform_ (https://www.votervoice.net/link/clickthrough/ext/374027.aspx) * _Truth in Advertising_ (https://www.votervoice.net/link/clickthrough/ext/374028.aspx) Unsubscribe If you no longer wish to receive this email please _unsubscribe_ (https://www.votervoice.net/link/clickthrough/int/JFEb28zbb/374029.aspx) . American Medical Association Patients' Action Network 25 Massachusetts Avenue, NW Ste 600, Washington, DC 20001 (https://www.votervoice.net/)
Re: [QUAD-L] update /pain
I agree that publicity is needed about the hospital. I would call the director and then the newspaper. That is so unfair and against all policies that should be in place. Dana. I'm so sorry about your pain. I hope you can find a solution and a great Dr. To examine you carefully and do all the testing that is needed as soon as possible. Dana In a message dated 7/25/2014 6:05:29 P.M. Central Daylight Time, michelle.keph...@gmail.com writes: This happened to me once before when I needed a chest x-ray. I also had to go to a different center that would help position me. On Fri, Jul 25, 2014 at 6:47 PM, nichole rohling _zoocrew1@windstream.net_ (mailto:zoocr...@windstream.net) wrote: my understanding is they must accommodate you From: Larry Willis [mailto:_lwillis82153@gmail.com_ (mailto:lwillis82...@gmail.com) ] Sent: Friday, July 25, 2014 5:02 PM To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: Fwd: [QUAD-L] update /pain Said they would not help What kind of outfit is this, Danny? I believe a bit of publicity via a letter to the paper is in order. Let them explain themselves to the public. -- Forwarded message -- From: Danny Espinoza _Danny@immortaldesigns.co_ (mailto:da...@immortaldesigns.co) Date: Friday, July 25, 2014 Subject: [QUAD-L] update /pain To: Larry Willis _lwillis82153@gmail.com_ (mailto:lwillis82...@gmail.com) , _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) They said they wouldnt help... I ended up changing to get it done at the hospital tomorrow instead of that imaging center. -Danny Original Message Subject: Fwd: [QUAD-L] update /pain From: Larry Willis lwillis82...@gmail.com Date: Fri, July 25, 2014 4:23 am To: quad-list@eskimo.com Danny, don't they have a couple of aides who can lift you onto the table? That's what I always do. Whatever you do, I wish you all the best. Chronic pain can simply wipe you out. Good luck and God bless, my friend. Stay strong. Larry Sent from my iPad Begin forwarded message: Resent-From: quad-list@eskimo.com From: Danny Espinoza da...@immortaldesigns.co Date: July 24, 2014 at 10:10:19 AM EDT To: quad-list@eskimo.com Subject: [QUAD-L] update /pain So... I've been hurting consistantlly and when I spoke to my dr he felt a mass on my arm and ordered an ultrasound. We got the results back and they said they didnt see anything which my Dr then ordered an MRI for this friday. When I called I asked if they had a lift or if I needed to bring my own which they replied sorry we will not allow you to do that on our property. So now I'm going to attempt to bring a sliding board and hopefully they wont have an issue wiith it. I really hope we figure this out soon because the constant and horrible pain is starting to get to me and constantly taking my Vicoprophen and barely being able to to get any rest/sleep because of the pain has got to be tough on my body... Has anyone else experienced extreme pain like this in their back and found an answer to the problem? I sleep in a fully adjustsble hospital bed with a rotating low air loss mattress and I do full range of motion twice per day. I'm really not sure whats going on and was curious if any other quads have had anything similar go on and what they did to get it to stop. -Danny
[QUAD-L] Re: Tell your Senators: Support Disability Rights Throughout the World
Dear Dana, We are coming down to the wire! It now appears that this month is the make or break time for the U.S. Senate to take up the UN Convention on the Rights of Persons with Disabilities (CRPD). Our champions in the Senate are working hard to garner enough votes to approve the CRPD. Key decisions are being made this week about whether or not to go ahead with votes on the treaty. We need to convince five more Senators to approve the CRPD before it will be brought for a vote. This is where you come in. Senators need to hear from their constituents that we need to maintain America’s leadership in the world on disability rights and we need to participate in the CRPD so the good progress we have made here under the Americans with Disabilities Act (ADA) can spread to other countries. Help us secure all the votes to ratify this important treaty this year! * TAKE ACTION: _Please contact your Senators TODAY and ask them to vote to ratify the UN Convention on the Rights of Persons with Disabilities_ (http://capwiz.com/easterseals/utr/1/FFEJTWXBIP/ONYZTWZNGF/10453701221) ! We are SO close. Sincerely, Katy Beh Neas Senior Vice President - Government Relations This message was sent to daa...@aol.com because you have supported Easter Seals or expressed interest in email from us. We respect your privacy and will not make your email address available to other organizations. If your Internet provider filters incoming email, please add easterseals.com to your list of approved senders to ensure you continue to receive email from Easter Seals. Thank you. _Update_ (http://capwiz.com/easterseals/mlm/signup/) your name, email address or other contact information. Easter Seals and its affiliates are 501(c)(3) nonprofit organizations. Easter Seals Headquarters, 233 South Wacker Drive, Suite 2400, Chicago, IL 60606 If you no longer wish to receive e-mail from us, please click _here_ (http://capwiz.com/easterseals/lmx/u/?jobid=236204763queueid=10453701221) .
RE: [QUAD-L] big, big birthday
congratulations Ron happy birthday#38 -Original Message- From: nichole rohling zoocr...@windstream.net To: 'RONALD L PRACHT' r.pra...@sbcglobal.net; quad-list quad-list@eskimo.com Sent: Wed, Jul 9, 2014 4:32 pm Subject: RE: [QUAD-L] big, big birthday Happy Birthday!! Nicki From: RONALD L PRACHT [mailto:r.pra...@sbcglobal.net] Sent: Wednesday, July 09, 2014 12:44 PM To: quad-list@eskimo.com Subject: [QUAD-L] big, big birthday Well people I made 38 today. Once I hit 42 I will have spent half my life on wheels. Get jiggy with it! Ron
Re: [QUAD-L] tv show
That would be great wheelchair! Dana In a message dated 7/7/2014 7:22:53 P.M. Central Daylight Time, wheelch...@aol.com writes: Would love to see a season of world travels, crossing the globe in wheelchairs for the ultimate prize. Anyone else? Best Wishes In a message dated 7/7/2014 7:01:31 P.M. Central Daylight Time, g...@eskimo.com writes: I never gave a point of view on good or bad, just mentioned I watched a bit of it. Obviously 2 days would never give someone a real idea of life in a chair. Way to many things they never will know about. Plus I'm sure off camera they cheated. I'm sure at home they didn't stay in it. So many types of disabilities, and 99% of our issues are nothing to do with how hard it is to use public transportation. If that was our main concern, life might be a lot easier. It only shows how the laws regarding access are a bit lagging. Not criticizing your reply just expanding on my first post... (ha ha) Greg These challenges, experiments, etc. may provide a brief glimpse into what it's like to have a disability, i.e. mobility, blindness, etc., but several days or even more can never simulate what it's like for people with disabilities who know they will never recover from them. The experimenters know they can always get out of the chair or take off the blindfold. It's like suggesting that if someone spends a couple or more days behind bars that they can appreciate what it's like to be in prison serving a life sentence with no chance of parole. Not criticizing you or your post, Greg. Just offering a point of view. Steve - C4, 26 years On Mon, Jul 7, 2014 at 5:31 PM, greg g...@eskimo.com wrote: I just watched a English TV show (Celebrity Wheelchair Challenge) about 3 celebrities who have to live 2 days in a manual wheelchair and take a trip across country, taking buss, plane, taxi. It was pretty interesting.There was a little pity party going on, but not a lot. It was on Youtube. Looks like there were others also, like going blind, etc. Greg
Re: [QUAD-L] Thursday afternoon paralyzed stories
That is a good idea as we forget each other stories. At least I do. Not everyone has told their stories. Dana, you did not say if he was alive or living in a nursing home. I don't think Missouri has very good care because of what a fellow quad list member told me, as she has passed. I know another guy in Kansas City, Missouri Also died because of lack of care. I'm really proud of you for helping him Ron. It is so sad. They were both great people. One I used to call frequently until she had no phone after nursing home. I had left a message on apartment phone and. Her mother had given me her cell phone so I could check on her., But when I tried to call the mother's cell phone, the number no one work. I did not know her mother's maiden name. The man that came to the hospital to talk to you about using a ventilator. I definitely decided I did not want one he was a peer for the whole person.. Dana. In a message dated 7/3/2014 5:29:49 P.M. Central Daylight Time, ddh...@sbcglobal.net writes: Yeah, we should get a story day going on here, lol, we could all tell the good, the bad the ugly or odd. ;-) Dan H.** On Thursday, July 3, 2014 4:47 PM, wheelch...@aol.com wheelch...@aol.com wrote: Kewl Ron. We need more stories like that and I'm sure you have a million of them. Best Wishes In a the and faith then a message dated 7/3/2014 1:34:14 P.M. Central Daylight Time, r.pra...@sbcglobal.net writes: I was involved in a swim organization for the disabled and met this paraplegic man back in 2003. We became friends pretty quickly and I gave him all the knowledge I knew to help him get going. I helped him find a decent chevy fullsize wheelchair van. The guy lit up and we were going to hooters and the casino and having a lot of laughs. It was truly imspiring to see the man excel and meet the challeges in his way. A few years went by and he had some setbacks, then he developed a pressure sore which led to weight gain which led to a power chair which led to a colostomy bag which led to the end of driving which led to bedbound. I didn't hear from him for 6 months, I finally contacted his brother on the net to ask where he was. He wouldn't tell me and I knew in my heart that only meant one thing.nursing home. My buddy eventually called me and said his mom and brother put him in a nursing home 30 miles away. Hes laying flat on his back and never gets out of bed for any reason. His power chair is down the hall somewhere. Maybe I was wrong but I sent a few words to his brother that I shouldn't have. The guy was tough and a boxer in his younger days. Hes around 55 if your interested to know. He just didn't have the support he needed, his mother was 84, but I helped them adapt a roll in shower and a small kitchen in their basement. He was paying a hundred bucks a day for assistance towards the end of it. A funny story about him was he took his wheelchair van down to the ghetto of St. Louis to try to find a date. The girl got in his van and stole his black bag he uses for catherization supplies...lololol. The thing that was beautiful is that he as living life but unfortunately now hes not because of a lack of support.sad Im going to try to write a small story I have experienced in quad life every thurs. Ron
Re: [QUAD-L] 16 Years
Congratulations Nicole on 16 years. You have learned a lot and you will continue to learn more to survive the years to come. Dana In a message dated 6/27/2014 9:54:59 P.M. Central Daylight Time, scamper2...@att.net writes: At 16 years you've just post the newbie stage, I made 26 years this past January, I'm still learning and each day is always a new adventure to look forward to. Don On Friday, June 27, 2014 7:25 PM, Larry Willis lwillis82...@gmail.com wrote: Congrats on conquering 16 tough years Nichole. Now let's knock out 16 more. Sent from my iPad Begin forwarded message: Resent-From: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) From: nichole rohling _zoocrew1@windstream.net_ (mailto:zoocr...@windstream.net) Date: June 27, 2014 at 6:57:13 PM EDT To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: [QUAD-L] 16 Years 16 years ago today was my olympic dive that changed my life forever – time flies! Nicki c5/6
Re: [QUAD-L] Friday afternoon disabled stories
What a wonderful story Bobbie. I know you meant so much to Cameron. Do you think he had another stroke? It's so sad to lose touch with people you care about. I love your heart also. We never know what a kind words and friendliness overall mean to a person that feels unloved. That's why I try to smile at everyone. Dana In a message dated 7/4/2014 2:39:12 P.M. Central Daylight Time, bobbiehumphre...@gmail.com writes: I drove to Kinkio's to get some printing done. (Next door to BN my favorite store) I get in line to pay for my printing, and I'm right behind a rather large man in a power chair. When he turned around after paying, I introduced myself to him and his aid/companion. After we both got out side, we talked for about 10 minutes and exchanged emails. As his aid wrote down Cameron's email I noticed for the first time, that he could only move one arm and spoke a if he had had a stroke with his face somewhat distorted. I really hadn't noticed that in the store. Cameron's speech was a bit difficult to understand but I've spoken to people with CP that was much harder to understand. My first email from him he said You were the first person who ever introduced themselves to me, and didn't turn away when I looked at them. We became fast friends. I drove over to his apartment (His Mother had an apartment across the hall) and he explained why he was in the chair. When he turned 34 he came home from work, turned on his answering machine and proceeded to listen to 34 Birthday well wishes from his many friends. That night, as he slept, he had three strokes in his sleep. Then he told me Do you believe, that not one of those friends, or anybody else, ever has been in contact with me since I've had my strokes? Cameron's job was to book bands in night clubs in New York City and Los Angeles. He flew from coast to coast and rode in limousine. He was a gay man, about 6'4 blond hair and blue eyes and extremely handsome. Very intelligent and extremely creative. Also, an amazing photographer. He was going to fairly Dickinson University (FDU) that was naturally down the street from where I'm starting to study architecture. I left after talking for about 2 hours, when I was down the sidewalk a little ways, his companion yelled down to me We love your heart. We stayed friends for about 8 years. Every Christmas I would get a CD of Christmas music that he would get from the internet of traditional Christmas songs sung by various artists in different styles. Cameron LOVED anything different. Last year, around this time, we got into an argument about something,that I can't even remember, and he wouldn't answer my phone calls or emails. But just after 1 week he sent me an apology email. Then his computer and phones weren't working. I hadn't heard from him for 2 or 3 months so I sent him a letter through snail mail but it came back ... deceased return to sender. This past Christmas was really tough not getting Cameron's special CD's but I cherish the 5 I do have. I love you and miss you Cameron. Bobbie Smile Everyday
[QUAD-L] Re: Take Action Next Week To Fix Medicare In 2014
You are receiving this email because you subscribed to the Patients' Action Network. Not interested anymore? _Unsubscribe_ (https://www.votervoice.net/link/clickthrough/int/JFEb28zbb/374019.aspx) . Next week members of Congress will be home for their July 4 break to meet with, and listen to, their constituents. This is a great opportunity for you to remind them about unfinished work on important health care issues that will affect patients' access to critical care this year and beyond. This Congress, lawmakers have taken serious steps toward repealing Medicare's flawed sustainable growth rate (SGR) formula. This formula is hurting physicians and patients by annually threatening payment cuts that will impact a patients' choice of physician and access to the care that they need. Unfortunately, this bipartisan legislation has stalled. We need you to remind Congress how important passing a permanent SGR repeal is to protect and preserve our Medicare system! _Send an email_ (https://www.votervoice.net/link/target/pan/JFEb28zbb.aspx) , or call Congress today at (888) 434-6200. You will be connected with the district office for your representative and senators. Urge your lawmakers to continue working in a bipartisan manner to protect Medicare and seniors' choice of physician by repealing the flawed Medicare SGR formula this year. The current Medicare system is broken. Real reform that will transform the program into an effective, 21st-century model of care is achievable this year, but it cannot be built on the crumbling foundation of Medicare's SGR formula. Take advantage of this time when your members of Congress are back at home: _Email_ (https://www.votervoice.net/link/target/pan/JFEb28zbb.aspx) or call (888) 434-6200 to be connected with their district offices and tell them to continue working together to repeal the SGR. Take Action Want to contact Congress? _Send an email_ (https://www.votervoice.net/link/clickthrough/ext/374020.aspx) or call toll-free at (888) 434-6200. Connect with us (https://www.votervoice.net/link/clickthrough/ext/374021.aspx) (https://www.votervoice.net/link/clickthrough/ext/374022.aspx) (https://www.votervoice.net/link/clickthrough/ext/374023.aspx) (https://www.votervoice.net/link/clickthrough/ext/374024.aspx) (https://www.votervoice.net/link/clickthrough/ext/374025.aspx) Learn about the issues * _Medicare_ (https://www.votervoice.net/link/clickthrough/ext/374026.aspx) * _Liability Reform_ (https://www.vote rvoice.net/link/clickthrough/ext/374027.aspx) * _Truth in Advertising_ (https://www.votervoice.net/link/clickthrough/ext/374028.aspx) Unsubscribe If you no longer wish to receive this email please _unsubscribe_ (https://www.votervoice.net/link/clickthrough/int/JFEb28zbb/374029.aspx) . American Medical Association Patients' Action Network 25 Massachusetts Avenue, NW Ste 600, Washington, DC 20001 (https://www.votervoice.net/)
[QUAD-L] Roho cushion problems from losing all the air
I was out last night and I wasn't aware that my Roho cushion was flat when I got home. It seems to be 2-3 inches long. And the same width and about 1/8 depth. But it is dark red and hard possibly a blister is the most red spots in the middle. It may be open on my side. I used to be so cautious about checking my air-conditioned and I have become lax, because that had not happened for so long. When it was put in the bathtub. My caregiver could see pinhole size. We are ordering a repair kit from Roho . I'm not sure what to use on it. Does anyone have any suggestions? I was looking cushions and I ran across a company called Ease cushions. I read about see testimonials and wondered if any of you have ever use or known anyone that used when they had pressure sores. I hate to be in bed all summer. Do any of you know any other special conditions for sores so you can get up with a sore a you are more protected, when you need to be out of bed for a while. I would appreciate information anyone could offer. Thank you, Dana, I would appreciate information anyone could offer. Thank you, Dana, I would appreciate
Re: [QUAD-L] Dreams
So true Ron, thank you for the dreams and wishes that could not come true. Dana In a message dated 6/14/2014 2:53:43 P.M. Central Daylight Time, bobbiehumphre...@gmail.com writes: Well said Ron! Smile Everyday On Jun 14, 2014, at 2:50 AM, RONALD L PRACHT _r.pracht@sbcglobal.net_ (mailto:r.pra...@sbcglobal.net) wrote: Everybody is jealous of somebody. The c1 just wants to breath on his own. The c4 has dreams of self transferring. The c5 wishes he could push a manual chair faster and up hills. The c7 wishes he had just a little more to perform all the tasks of a bowell routine. The t4 wants more ab control. The t12 wishes he could urinate on his own. The l1 wishes he could feel his penis. The guy that can stand and shuffle wishes he could walk. The guy that can walk a little wishes he could run. The man that runs wishes he had the guts to ask his dream girl out. The guy with the dream girl wishes he had more time to himself. The meaning of what Im saying is life is a gift and is short. Thousands of people die everyday. Thirty five thousand people die in car accidents every year. Thirty thousand people commit suicide each year. Ten thousand are paralyzed each year. All of this just in the united states. Try to do what you can with what you have left. Comparing yourself to others will bring you misery. If you do one thing each day to improve yourself, it will amount to something b4 you know it. Ron On Saturday, June 14, 2014 1:05 AM, Danny Espinoza _Danny@ImmortalDesigns.co_ (mailto:da...@immortaldesigns.co) wrote: *jealous of those of you who have enough function to handcycle -Danny Original Message Subject: Re: [QUAD-L] Dreams From: RONALD L PRACHT _r.pracht@sbcglobal.net_ (mailto:r.pra...@sbcglobal.net) Date: Fri, June 13, 2014 8:04 pm To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Another drug that works well to calm you and wont hurt you is lorezapam. You can take a 1mg pill and it helps out a lot. I have dealt with the crazy dreams at night. When Im experiencing pain or when im dysreflexic from needing to urinate my dreams get more intense. One more thing to add is activity during the day to wear you out helps you sleep. Obviously your level of function depends on how much you can wear yourself out. When I wheel my chair at least a mile or attach my handcycle and do a few miles Im in a better mood, less pain and sleep better. Each person can probally figure some activity to tire themselves out, maybe a handcycle on a table like at rehab or have some 20 min routine you do with moving your arms or a light freeweight attached to a cuff. There is a guy on youtube that sets up basic simple workout routines for people in chairs that require very little. I set goal for myself of 30 miles each month on my attachable rio dragonfly handcycle. I document the miles and write it all down. It helps my mind and the pain from my syrinx and hernia. Good luck Ron On Friday, June 13, 2014 8:23 PM, Quadius _quadius@gmail.com_ (mailto:quad...@gmail.com) wrote: I have been having a similar problem, but not as often. I usually have it a couple of times a night. I have found putting my TV on a timer and listening to a historical-based documentary has helped me get to sleep without having these terrible dreams. If they keep up, I might consider asking for medication. Quadius On Fri, Jun 13, 2014 at 8:20 PM, Larry Willis _lwillis82153@gmail.com_ (mailto:lwillis82...@gmail.com) wrote: Panic attacks. About four years ago I began having them at night. Not as frequent as yours, but I still felt like I was going to explode. It was horrible. My doc gave me a small dose of Xanax to take at bedtime. I haven't had one since. Good luck. -- Forwarded message -- From: greg _greg@eskimo.com_ (mailto:g...@eskimo.com) Date: Friday, June 13, 2014 Subject: [QUAD-L] Dreams To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) For weeks now I've been waking up every few hours, with panic dreams. My heart is racing, pounding. My breathing is heavy, and I feel like I need to get up. I haven't changed meds or anything. If it was just waking up in the morning like that I could handle it, but it's like 5 times a night. Often I think I can't breath. Other times I'm getting chased by a mob, etc. I'm so tired. Greg =
Re: [QUAD-L] Muscle relaxer Baclofen/spasms question
My prescription is 10 mg 4-5 times per day. I used to take 20 and it slowed down my bowels. Dana In a message dated 6/8/2014 11:40:52 A.M. Central Daylight Time, blan...@verizon.net writes: 30mg 5x a day. Sent from my iPad On Jun 7, 2014, at 22:35, Danny Espinoza _Danny@ImmortalDesigns.co_ (mailto:da...@immortaldesigns.co) wrote: My spasms are increasing and I'm unsure why because it doesnt look/feel like I've got a UTI and I haent dysreflexed in a while. I can only assume my Baclofen needs to be upped... Right now I'm taking 10@9AM, 10MG@4PM and 10MG@10PM. I plan to ask my doctor this week but I'm curious how much those of you that take Baclofen take? -Danny
Re: [QUAD-L] Larry, Nan's b-day
Happy birthday Nanny, Meredith and anybody else. I may have been. I hope you were able to Enjoy something special. In a message dated 5/25/2014 12:50:55 P.M. Central Daylight Time, nlg52...@yahoo.com writes: Thanks Meredith! Enjoy something special On Saturday, May 24, 2014 7:06 PM, jume9...@comcast.net jume9...@comcast.net wrote: Happy birthday to both of you! Meredith From: Nan nlg52...@yahoo.com To: linda...@comcast.net, Larry Willis lwillis82...@gmail.com Cc: quad-list quad-list@eskimo.com Sent: Saturday, May 24, 2014 1:31:05 PM Subject: Re: [QUAD-L] Larry, Nan's b-day Thanks Linda F. :) On Friday, May 23, 2014 8:23 PM, linda...@comcast.net linda...@comcast.net wrote: Happy Birthday Larry Nan!!! lindaf
Re: [QUAD-L] People in wheelchairs hit by vehicles
Thank you Ron. That is terrible, a lot of people drive carry. I think you really need you have someone with you. Driving your chair alongit is dangerous . Dana. In a message dated 5/7/2014 9:40:33 P.M. Central Daylight Time, r.pra...@sbcglobal.net writes: I like to be aware of whats going on in the world so I read a lot on the net. I just typed in wheelchair user hit by car and I couldn't believe the amount of people hit and either hurt or killed. Just in 2014 the amount was crazy to me. A lot of them were in the crosswalk to. Most of the time the driver isn't even ticketed. Be careful this summer people while you are on your treks around the cities. Ron
Re: [QUAD-L] am I cold, or am I hot
Happy birthday. Joan, will you have any more! Dana In a message dated 4/3/2014 6:06:48 P.M. Central Daylight Time, poaj...@sbcglobal.net writes: Same boat here in Reno. The only time I am perfectly content with the weather is in full sunshine, temperatures between 72°and 85°, then next up to 95°with a breeze. At night I am the same as you June, only I cannot turn on my heating pad, just my fan which is an oscillating one by my bed. I have a radiant heater from harbor freight that sits next to my desk and is turned on to 400 W. It is both the heat and the radiant look that keep me warm in winter. Then I have my wood stove with a glass door for the evenings. Thank goodness Reno has lots and lots of sun days even in winter. lived in England for four years and loved it then fog and but would not like it now. Cheers to all. Joan
Re: [QUAD-L] Fun good deed
That is such a thoughtful thing to do. Bobbie. It is kind of like the pay it forward. Dana In a message dated 3/23/2014 3:58:50 P.M. Central Daylight Time, bobbiehumphre...@gmail.com writes: Hi All, About 5 days ago I bought 28 carnations to give away here in my apartment building. I made small tags and taped to each flower that said, Love Bobbie. I've been living here for over 31 years now and have made many good friends with the ladies who are 70s, 80s 90+ years old. I zipped around the building to tape these carnations to 28 doors . . . for no particular reason. I got a bunch of phone calls from many to say Thank-you so much for the flower, it made my day. Perhaps that was my reason for handing out the carnations. This is my 6th years I've done this. I usually do it in the dead of winter. Bobbie Smile Everyday
Re: [QUAD-L] Don't know if I shared this before
Hi wheelchair and quad list members: on Monday. My caregiver noticed that my foot was totally lose. It usually is fixed at a 90° angle. I had foot drop surgery in May of 2012. My ankle was operated on and a fixator was used. It was not checked for eight days and I developed gangrene because it was on too tight. I was in the hospital one month for IVs. Then I had to have a wound vacuum for two months before plastic surgery. I went to KU ER and they thought it was a ruptured tendon and a sent me to a plastic surgeon. He read the x-rays and said my fusion had come apart and he referred me to of orthopedic surgeon. Now I'm not sure what to do. I don't feel comfortable going back to the same Dr. I called my rehab Dr. and left a message and called the original orthopedic Dr. that did my first foot drop surgery in 1980. Do you have any suggestions of what I should do. Has anyone else ever encountered this problem. Or do you know of anyone. I would appreciate any thoughts or recommendations. Dana C4-5 complete quadriplegic, it will be 40 years. In July 26, 2014. I have osteoporosis. In a message dated 3/21/2014 1:03:44 P.M. Central Daylight Time, kkba...@outlook.com writes: At the moment I have separate remotes for lights opening the front door. Need one that will unlock the dead bolt tho. Sleeping with the door unlocked at the moment. Scary. KK Date: Fri, 21 Mar 2014 13:50:23 -0400 From: whe...@cvn.net To: quad-list@eskimo.com Subject: Re: [QUAD-L] Don't know if I shared this before I notice that they have voice control ECU's. I have the Imperium 200H ECU base unit plus large remote. It is rocker switch/push button control. List price of base unit from abledata.com is $3580 I'd be interested in selling if anybody is looking for an ECU. It can control phone,tv,stero, lights, bed, appliances Derrick W On 3/21/2014 12:37 PM, KK Batte wrote: It's about ECU http://www.ablenetinc.com/Assistive-Technology/Environmental-Control-Units-E CU =
Re: [QUAD-L] 45th Anniversary!
Hi Nan, Thankful for your life. I'm glad you're here on your 45th anniversary. Each year we know it gets a little harder as our bodies age. I hope you celebrated in some way and that day or planning something you would enjoy doing. Dana In a message dated 3/17/2014 11:59:36 A.M. Central Daylight Time, jume9...@comcast.net writes: Hi Nan, here's wishing your 45th will be a good one!! meredith From: Naomi Hudson ladyno...@aol.com To: DAANOO aol.com, quad-list@eskimo.com Sent: Sunday, March 16, 2014 5:02:02 PM Subject: Re: [QUAD-L] 45th Anniversary! Nan, Happy 45th Anniversary. I know for us it's a great feat to make it another year. I hope you enjoyed your anniversary I wish you many more. Have a Blessed Day, Naomi -Original Message- From: DAANOO daa...@aol.com To: nlg52352 nlg52...@yahoo.com; quad-list quad-list@eskimo.com Sent: Fri, Mar 14, 2014 1:55 pm Subject: Re: [QUAD-L] 45th Anniversary! In a message dated 6/7/2013 10:15:02 P.M. Central Daylight Time, _nlg52352@yahoo.com_ (mailto:nlg52...@yahoo.com) writes: First, congrats to those of you who have made it longer than I. It's a real accomplishment! I was going to write earlier but got knee deep in filling out entry forms copying documents for the next horse show. I did celebrate with a big bowl of soft chocolate ice cream! Then a mandatory tilt for a couple of hours, and now on to you all. All I can say is... Hooray! I made it another year! Nan 45 years post C5/6 Complete Trampoline/Pool slide accident 6/7/68
Re: [QUAD-L] Sores
I had a sore that was on the bottom of my bottom. Kind of like the panty line. I was in bed. 6 months and they use a treatment to go inside the wound and it helped to grow new tissue. It is called is I was using my laptop and somehow er cord got under my I was using my laptop and somehow the power cord got under my bottom. It was super hot, because there was something wrong with it. I think I was on Blue Cross primary, and Medicare secondary. I didn't have to have co-pay. You might check it out. There may be something better than this on the market. At that time I was drinking L-arginine, but not the generic kind. It was a drink. Now I get in a pill form, much cheaper. I believe I just 2 L-arginine and 2 zinc 250 each. Have you checked the wound clinic? I go there any time I'm getting a spot I am worried about. This sore was 6 inches long. And I'm not sure how deep. This seemed to cure me in six months. I was in bed unless I went to the doctor, wound care or wash my hair. Fibracol plus. http://www.systagenix.net/our-products/lets-promote/fibracol-plus-185I was using my laptop and somehow the power cord got under my bottom. It was super hot, because there was something wrong with it. I think I was on Blue Cross primary, and Medicare secondary. I didn't have to have co-pay. You might check it out. There may be something better than this on the market. At that time I was drinking L-arginine, but not the generic kind. It was a drink. Now I get in a pill form, much cheaper. I believe I just 2 L-arginine and 2 zinc 250 each. Have you checked the wound clinic? I go there any time I'm getting a spot I am worried about. This sore was 6 inches long. Several inches wide. I'm not sure how deep. This seemed to cure me in six months. I was in bed unless I went to the doctor, wound care or wash my hair. Fibracol plus. http://www.systagenix.net/our-products/lets-promote/fibracol-plus-185 In a message dated 3/14/2014 6:58:02 P.M. Central Daylight Time, lwillis82...@gmail.com writes: Wow, guys, Some tough situations and even tougher people. I've had a 4 inch sore on my butt for over 6 yrs. It just refuses to heal. We dress it twice a day. It is not deep and doesn't tunnel. However, it is a wide open sore. I sit on a Roho and fully expect to take this sore to the grave with me. I simply cannot and will not spend the 12 months or more in bed that healing would require. It burns and hurts like crazy some daysand nights. However, I am 62 and 43 years post. I'm pretty sure I'm not nearly as motivated as I once was. Sent from my iPad
Re: [QUAD-L] 45th Anniversary!
In a message dated 6/7/2013 10:15:02 P.M. Central Daylight Time, nlg52...@yahoo.com writes: First, congrats to those of you who have made it longer than I. It's a real accomplishment! I was going to write earlier but got knee deep in filling out entry forms copying documents for the next horse show. I did celebrate with a big bowl of soft chocolate ice cream! Then a mandatory tilt for a couple of hours, and now on to you all. All I can say is... Hooray! I made it another year! Nan 45 years post C5/6 Complete Trampoline/Pool slide accident 6/7/68
[QUAD-L] SCI Novels
Thank you Bobby for the information. I met Joni a couple years after my accident, when she was speaking at a church in Shawnee Mission, Overland Park, Kansas. She is beautiful and so extremely talented, it is amazing how much she has accomplished in her life. She also had to fight breast cancer a few years ago and there was a video on the Internet with her and her husband sharing this experience.. I remember seeing, the other side of the mountain and it was so encouraging to see her accomplishments and milestones, she accomplished in her life. I believe she may have been one of the oldest living quadriplegic, but I could be wrong. It would be fun to see those movies again. I encourage everyone to see the Intouchables. This is a great movie. I think everyone will enjoy it. Please forgive my Dragon errors. quadriplegic is played by Francois Cluze http://www.imdb.com/name/nm0167388/ He looks so much like Dustin Hoffman. It is unbelievable. His caregiver doesn't seem like he can handle the job, but it is wonderful. He develops an awesome relationship with his boss that changes both of their lives. _http://www.imdb.com/title/tt1675434/ Dana C4-5, 38 years _ (http://www.imdb.com/title/tt1675434/Dana C4-5, 38 years has) From: bobbiehumphre...@gmail.com To: donpric...@yahoo.com CC: quad-list@eskimo.com Sent: 6/25/2013 8:01:24 P.M. Central Daylight Time Subj: Re: [QUAD-L] SCI Novels I've read a few that I'd like to pass along., One My Soul purpose by Heidi Van Beiltz She became a C5,6 quadriplegic from a car accident while doing a stunt in Hollywood. She was a stunning woman in Hollywood when she had her accident back in the late 1980s early 1990s. She talks about her close relationship with Melanie Griffith and also with Willie Shoemaker. Willie Shoemaker himself was a jockey, he was involved in a single person car accident while drinking and driving he is a C3,4 Quadriplegic. Rating B+ Joni by Joni Erickison She became a quadriplegic in a diving accident in 1967. She does a lot of painting owns a radio station and runs a Christian ministry. She also has an amazing website that is definitely worth looking into. She wrote one book before she met her husband and wrote the second book after she met her husband. She also has written about two or three other books on Christianity disability. Rating A The Other Side of the Mountain Part One by E.J Valens It's a story about Jill Kinmont who was trying out for the Winter Olympics and broke her neck to C4,5 in 1955 She just passed away this year. There are two books about her one before she met her husband and another one after. There's also a movie that was made about her life. Rating A The Other Side of the Mountain Part Two by E.J.Valens Like I mentioned above this book is about when she met her husband and learning to live life as a quadriplegic.She became a schoolteacher when she went to college inCalifornia. Bobbie Sent from my iPad On Jun 24, 2013, at 2:37 PM, Don Price _donprice63@yahoo.com_ (mailto:donpric...@yahoo.com) wrote: Jim shared his really cool list of movies featuring quadriplegics: http://www.imdb.com/list/2OTqiWRR9R8/ Many of those movies came from novels. I was wondering if any of you have read any book regarding SCI [fiction or non-fiction.] I'd be interested in your review, good or bad, regarding any SCI-related novels. I have a couple: 1. The Dive From Clausen's Pier. Fiction. By Ann Packer. [Also a movie to add to the list, Jim] This novel was riveting to me, at the beginning, because I was injured in a diving accident and the details in this story were eerily similar; so similar, in fact, that my sister started reading this book but couldn't continue. However, the character with quadriplegia is really the secondary protagonist in this novel, so about halfway through it became much less interesting to me. Still worth a read if you need a beach book this summer. Grade: B- 2. Moving Violations. Non-fiction. By John Hockenberry. John Hockenberry is an award-winning reporter who has worked for NPR, ABC and NBC. John is paraplegic since a car accident at age 19, and this is his memoir. I read this novel about five years ago and found it very entertaining. John discusses his adjustment to disability, his travels around the world and some poignant inter-personal relationships. There's one story involving his ex gf that is so unbelievable I still laugh to myself when I think about it. The book suffers a bit by its length--at 350+ it could have used a healthy editing--but overall it was a fun read. Grade: A- 3. Will the Real John Callahan Please Stand Up? Non-Fiction. By John Callahan. Most of you are probably familiar with the work of cartoonist/quadriplegic John Callahan. His cartoons are crude drawn, often vulgar and
Re: [QUAD-L] Stuck in bed for over a month
Hi all, Sorry to hear about your hospital experiences Ron. That was really rough to come home in be by yourself right after surgery. I certainly hope that you are shearing from dancing heal quickly.. I had a similar situation and I always wonder why our needs are still so misunderstood in-hospitals. It is always a nightmare to have surgery, IV's for a UTI, pneumonia, bowel blockages, wounds needing a wound VAC for two months and then skin graft. One UTI caused a coma twice, intubation after several surgeries. So many nurses have never suctioned.. They still don't understand digitals and the bowel routine. I do believe I have had a member of near-death experiences through hospitalizations. What are your opinions? I have never heard of lorazepam. I'll have to look it up.. Dana In a message dated 10/29/2013 9:12:08 P.M. Central Daylight Time, r.pra...@sbcglobal.net writes: I did over a month in the hospital when my appendix burst in 2011. I had a 14 inch incision down my abdomen area and was hooked up to a wound vac. My bowells shut down completely and I couldn't eat or drink for close to three weeks. Did have minimal sips of water but had the tube in my nose and would throw up if i cheated. Every other day my father would come in and between the two of us straining, I would attempt to get onto the bowell chair. It was scary with no results, pain, passing out on the chair but it had to be done and the nurses werent going to do it. I normally straight cathe independently, but was hooked up to a foley and that got plugged up and i went dysreflexic bad, and they still didn't believe it was clogged til I went crazy. The same hospital that taught me how to live as a quad and about dysrelexia, suddenly didn't know what i was referring to. I told the infectious disease doc to please look it up and at least prescribe something to lower my blood pressure during these times. It was crazy to be in bed and deal with so much, lorezapam helped me from going crazy at night. I just kept hoping I could get out of there without any secondary complications, but I got c-diff. Then everybody treated me like I had the plague..wearing gowns and masks. My family refused to wear them because it was pointless because they were so involved with my care.my gf at the time and father did about everything to keep the nurses happy. Somehow i made it out of there and could very slowly and dangerously get in bed and cathe myself. Dad went back to second shift the day I went home and i had to survive from 2 to midnight alone. I wasn't sure how fast or if I would fully recover. I wouldn't say Im as good as b4 all that happenned , but Im good enough to make it . Gf broke up with me, swim organization changed things so i couldn't go back, counselor quit...and I fell pretty hard emotionally. Im still here though and with that there is hope. Ron From: Gmail bobbiehumphre...@gmail.com To: greg g...@eskimo.com Cc: quad-list@eskimo.com quad-list@eskimo.com Sent: Tuesday, October 29, 2013 7:56 PM Subject: Re: [QUAD-L] Stuck in bed for over a month Greg, I was in Nov. 2013- May 2013 and AGAIN now 5 weeks without getting up AT ALL What do you do to keep your mind busy? I read, write, watch TV and on my life saver the ipad.Bobbie Smile Everyday On Oct 29, 2013, at 5:42 PM, greg _greg@eskimo.com_ (mailto:g...@eskimo.com) wrote: Yes, since July. But I do get up for a couple of hours a few days a week. Pressure sore on my butt I just don't think I can do the surgery. Having to go 4-6 weeks with no getting up at all. I need a bit of sun a few days a week. I went a whole week once and it did not heal any faster that week. Greg Hi All, Is there anybody else right now who has been stuck in bed for a month or more? Just wondering. Bobbie Smile Everyday
[QUAD-L] (no subject)
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Re: [QUAD-L] Power chair questions
I currently have a PER mobile 300 but it is rearwheel drive I did not feel comfortable in the mid-will especially driving around the block to my mother's house. This is my third one. Good luck with your choice. Dana In a message dated 1/21/2014 2:05:30 P.M. Central Standard Time, da...@immortaldesigns.co writes: To be clear currently I've got a Quantum 6000z that I'm unhappy with and I'm looking at getting a Permobil m300 Original Message Subject: Re: [QUAD-L] Power chair questions From: Don Smith _scamper2695@att.net_ (mailto:scamper2...@att.net) Date: Tue, January 21, 2014 10:13 am To: Danny Espinoza _Danny@ImmortalDesigns.co_ (mailto:da...@immortaldesigns.co) , _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) I demo'ed the m300 mid wheel drive last spring, it's much better then my 13 year old quickie p300. As for the head rest I can get by with a basic one that we adjust once and leave it, I only need it when I tilt back. I didn't have any issues with my knees spreading like they do with my quickie. I wonder if the footrest was set low enough for you. The only issue I have with the m300 is low ground clearance, I live in town and had no problems but I'm thinking about driving again and need to find out about any special lockdown that may be needed. Don From: Danny Espinoza _Danny@ImmortalDesigns.co_ (mailto:da...@immortaldesigns.co) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Monday, January 20, 2014 7:16 PM Subject: [QUAD-L] Power chair questions I keep having problems with my Quantum 6000z and was told in may I will be able to submit for a new power chair. I'm very happy about that! I've got some questions for you guys about it... I'm thinking about getting a permobil m300 which is a mid wheel chair. The question I've got is about the head and foot rest systems. My chair right now the feet are together which causes my knee's to open up which I hate. On my current chair I've been using a gate belt around my thighs to bring my knees closer together. I think this was due to my feet having to be together due to the foot plate being one small piece of metal with ankle straps and not being two plates that my feet can be separated. My headrest never really has been comfortable because my head doesn't really rest on it... It touches it if I recline a little though so I've reclined the seat back and chair a little so my neck doesn't wear out and get sore so fast. I need to make decisions on which headrest, foot rests, arm rests and seat I want and was curious which you guys recommend? Also what do you guys think of the permobil m300? Thanks in advance! -Danny
Re: [QUAD-L] center drive wheelchair question
I agree, I tried the center drive wheelchair and I didn't like it, especially on the street. Dana In a message dated 3/7/2014 11:41:37 A.M. Central Standard Time, diannal...@aol.com writes: I agree with W, 100%!!! As part of your OT Evaluation, living in the country is all part of it. Personally, I don't like the center drive wheelchairs on anything other than a smooth, flat dry surface. I like the rear wheel drive units. But I realize that much depends on each individual. Best Wishes In a message dated 3/5/2014 12:13:43 P.M. Central Standard Time, _kelray85@gmail.com_ (mailto:kelra...@gmail.com) writes: I will be getting a new wheelchair that summer and I have a few questions that I am hoping people on here will have some opinions about. I live out in the country on a dirt road on a farm. I spend a lot of time outside during the summer and I am on grass and gravel most of the time. I am wondering if anybody has any idea how the center drive wheelchairs work on those kind of surfaces. It seems to me like the smaller wheels in the front and the back would get caught up in the grass and gravel. I had a salesman tell me last year that a center drive would be fine and I have had other representative say that the center drive would not work well at all on those surfaces. I am just looking for some opinions from the people actually use the wheelchairs every day. Thank you very much in advance for your help with this. Raymond C3/4 complete -Original Message- From: wheelchair wheelch...@aol.com To: kelray85 kelra...@gmail.com; quad-list quad-list@eskimo.com Sent: Wed, Mar 5, 2014 6:14 pm Subject: Re: [QUAD-L] center drive wheelchair question As part of your OT Evaluation, living in the country is all part of it. Personally, I don't like the center drive wheelchairs on anything other than a smooth, flat dry surface. I like the rear wheel drive units. But I realize that much depends on each individual. Best Wishes In a message dated 3/5/2014 12:13:43 P.M. Central Standard Time, _kelray85@gmail.com_ (mailto:kelra...@gmail.com) writes: I will be getting a new wheelchair that summer and I have a few questions that I am hoping people on here will have some opinions about. I live out in the country on a dirt road on a farm. I spend a lot of time outside during the summer and I am on grass and gravel most of the time. I am wondering if anybody has any idea how the center drive wheelchairs work on those kind of surfaces. It seems to me like the smaller wheels in the front and the back would get caught up in the grass and gravel. I had a salesman tell me last year that a center drive would be fine and I have had other representative say that the center drive would not work well at all on those surfaces. I am just looking for some opinions from the people actually use the wheelchairs every day. Thank you very much in advance for your help with this. Raymond C3/4 complete
Re: [QUAD-L] Moving out on my own
I moved out of the nursing home in September 1980. So it will be 34 years. Original Message- From: Gmail bobbiehumphre...@gmail.com To: quad-list quad-list@eskimo.com Sent: Wed, Feb 26, 2014 8:53 pm Subject: [QUAD-L] Moving out on my own Hi All, Today is 31 years since I moved into my 1 bedroom HUD apartment! I paid $69 per month. Bobbie Smile Everyday
Re: [QUAD-L] I phone
That is really good price for the stylus. I got most of them at Verizon and ordered some from the manufacturers. I go through them so quickly. Do you? Oh, yes, I'm sure if you already have an iPad. Both are a little overkill. How do you use your iPad. How do you position it on your lap. I don't know. I would position it to use on my tray without dropping. I have phone holders for my iPhone. How do you hold your devices? I wish they would have a phone on the iPad. Dana In a message dated 2/22/2014 4:25:28 P.M. Central Standard Time, blan...@verizon.net writes: iPhone 4S with OtterBox case, because you will drop it. I use a micro weave tip stylus which works better than my knuckle. All in all for me, an all right phone. I have an Ipad, which makes texting and msg. Stuff easy via voice, so the iPhone is a bit of overkill. Stylus: http://www.amazon.com/gp/product/B007FXMOV8/ref=oh_details_o00_s00_i00?ie=UT F8psc=1 Don't get fooled by others. This one is by far the best. OtterBox you can get anywhere. Mine is bright pink. I am color blind and the pink was cheapest. I am not translate gendered. Billy Lang Sent from my iPad On Feb 22, 2014, at 6:16, Dana Wray _daanoo@aol.com_ (mailto:daa...@aol.com) wrote: I use the iPhone 4S I use a stylus that is on a split. Can send you a couple pictures of the stylus and my splints I also have a box that I got at Walmart it opens and I put phone holders on top of it to hold my iphone. Not using my iPhone without the style and I also use the data cord that I buy at Best Buy. It allows the stylus to work without touching. Dana Sent from my iPhone On Feb 21, 2014, at 11:30 PM, RONALD L PRACHT _r.pracht@sbcglobal.net_ (mailto:r.pra...@sbcglobal.net) wrote: Hey, Does anybody on the list use an I phone? I found a case on ebay I can put a lanyard on so the phone can be grabbed easily with non working hands. I was using my mothers ipod and figured out how to use the knuckle on the side of my thumb to text. I think with practice I can manage it. May regret it, but think im going to get one. Ron =
Re: [QUAD-L] Mind Controlling Monkeys Are Here!
I was interested in getting a monkey, but then I moved and did not get. They had already sent me the large cage and they treat dispenser. They had already drawn the outline of my house to train a monkey. Dana In a message dated 2/21/2014 6:32:06 P.M. Central Standard Time, wheelch...@aol.com writes: I saw that movie twice. And that was enough for me. That is why I use 2 Mind Controlled Turtles. That is my perfect speed. Best Wishes In a message dated 2/21/2014 5:54:46 P.M. Central Standard Time, donpric...@yahoo.com writes: Watch the movie 'Monkey Shines.' 1988 About a quad who has a helper monkey that's trying to kill him. Creepy. On Thursday, February 20, 2014 1:58 PM, Gmail bobbiehumphre...@gmail.com wrote: Well that is way cool, very futuristic know it's here and now!! Bobbie Smile Everyday On Feb 20, 2014, at 1:02 PM, Danny Espinoza _Danny@ImmortalDesigns.co_ (mailto:da...@immortaldesigns.co) wrote: Mind Controlling Monkeys Are Here! http://youtu.be/N66xNpxJENg
Re: [QUAD-L] itchy scalp
Joan, is it an oil. Does it make your hair greasy? Dana In a message dated 2/8/2014 9:12:32 P.M. Central Standard Time, poaj...@sbcglobal.net writes: I have always had a severely itchy scalp since my SCI. About nine months ago I began using olive leaf from Amazon on the advice of someone here on the list. It’s has helped my scalp, my left over shingles, and my skin. I use a bottle a month, about $9.00. I began noticing a difference after two or three weeks. Try it, you might like it. Joan From: greg [mailto:g...@eskimo.com] Sent: Saturday, February 08, 2014 4:19 PM To: quad-list@eskimo.com Subject: [QUAD-L] itchy scalp For quite some time the top of my head has itch so bad. I've tried a bunch of different shampoos, moisturizers, cortisone creams, but nothing works. It's like the very top of my head. I'm sure it's not that I am not getting all the shampoo out. That's the one spot that gets rinsed off the best. I thought it might be sunburns, but I have gone months now never going outside without wearing a hat. Sometimes it can itch so bad it hurts. Sometimes I don't notice it but if the area gets touched it will start up again. It's not red, it doesn't look irritated. I even cut my hair very short, like 1/4 inch long. There are no bumps, red spots, scratches, bugs, etc. my regular doctor looked at it and said it looked fine. So I guess maybe I should see a dermatologist or something. Because some days it drives me crazy. I can't reach that spot very well to scratch it, I can barely reach it with just the back of my hand/thumb. And that doesn't scratch it very well. For the lhast year so I have Kept my hair very short. I was thinking maybe one of the times when they cut my hair short using a pair of shears, the shears somehow scratched my scalp and irritated it. Greg
Re: [QUAD-L] Days in bed 2013
I would go to the wound center and get a second opinion. I was being followed by a plastic surgeon, when I had a wound vacuum and a nursing agency. He had taken off and look at it every several weeks. He had to determine how long I used, until I was ready for plastic surgery a skin graft. Mine was my heel two years ago after an external fixater was not checked after surgery for foot drop and became gangrene. It wasn't very long ordeal 1 month in the hospital after surgery and 2 months on the wound VAC before the plastic surgery. Dana C 4-5 complete, 39 years In a message dated 1/28/2014 5:48:16 P.M. Central Standard Time, wheelch...@aol.com writes: Rare is it that Medical Doctors touch or maintain Wound Vacs. Doctors observe and de-breed the wound. They measure and look for healing. Wound Vac (the company) trained RN's on how the machine works, operates and how the unit is installed on the patient. The company teaches how to trouble shoot and resolve issues when they happen. So if a doctor says he has not had a lot of success, there must be a reason why. I've seen some excellent nursed that were dedicated to the artform, and some who were not and considered their job, a task. Your doctor knows you and your body much better than I so I would do what your doctor insist. Best Wishes In a message dated 1/28/2014 5:16:13 P.M. Central Standard Time, g...@eskimo.com writes: I asked about the Wound Vac for my butt sore. My doc said he has not had alot of success with the Vac on butt wounds. Greg you should be able to go out patient and get the wound vacuum and have a visiting nurse take care of it. I got mine while
Re: [QUAD-L] SelectAir air mattress
I didn't realize that. I'm I the the only one on the quad list that sleeps an old-fashioned waterbed turned on hundred. I never get any kind of sores from the my bed. It can happen with underpads both disposable and reusable. One time I burn my bottom because the power cord from my laptop was under my bottom and it was very hot and about to burn out. When we cannot feel it is so hard., I have gotten pressure sores from my cushion going flat and not knowing. I use a high-profile, quadta Roho. Why can't there be something invented that would let you know when the air goes out. Someone needs to invent that. Dana In a message dated 1/27/2014 7:56:41 A.M. Central Standard Time, davekrehb...@earthlink.net writes: I have an air mattress, which alternates pressure between different sections. Yes, it is harder to get warm, because the air pump is blowing cold air into the mattress, and probably through the mattress and under your sheets. The good news is: cooler temperatures and alternating pressures help to reduce wounds. The bad news is the cold. I sleep with three blankets and sometimes a wool cap to keep warm. Dave From: nichole rohling [mailto:zoocr...@windstream.net] Sent: Saturday, January 25, 2014 7:44 PM To: 'Raymond Kelly'; quad-list@eskimo.com Subject: RE: [QUAD-L] SelectAir air mattress I use flannel sheets year round and I’m in Oklahoma. Nicki From: Raymond Kelly [mailto:kelra...@gmail.com] Sent: Saturday, January 25, 2014 4:53 PM To: xQuad-list Subject: [QUAD-L] SelectAir air mattress Hello, I am a C3/4 complete quadriplegic. I have been sleeping on a foam mattress for years without a problem, but I recently got a chance to try out a SelectAir air mattress.I was offer this mattress secondhand for free and I have heard how air mattresses are supposed to be better for us quadriplegics so I figured I should give it a try. The main problem I seem to have with it is that I could not keep warm enough. For some reason I had to put a lot more blankets over me to warm me up on the air mattress then on the foam mattress. I am just writing wondering if anybody on this list uses that type air mattress and have had the same problem? While I am writing, I am wondering what other people who use that mattress used for sheets. Thank you very much in advance for any information you could offer me about this. Raymond Kelly
Re: [QUAD-L] Misc.
Thank you for the information, I love cottage cheese and red pears. It is also a good salad dressing. I also like yogurt and I know it has protein. There's a yogurt drink I like called kerr and if the liquid form. I don't know how it compares to Greek yogurt that you can drink it which is convenient. I drink ensure with MiraLax and fresh blueberries every day. It is really good and very easy. I've I frozen blueberries. Dana In a message dated 1/27/2014 8:09:09 A.M. Central Standard Time, davekrehb...@earthlink.net writes: I had a similar wound, at one time about the size of a baseball, and over a year or so he healed completely. One additional tip: lots of protein. I was surprised to learn that the number one source of protein is cottage cheese (at least on the list from the rehab facility…). I told my wife I needed more protein, and requested that she bring me a prime rib steak once a week. I don’t know if the steak helped, but it didn’t hurt. Over time, the wound was reduced in size to less than the size of a marble, and it seemed to take forever to eventually close up. Dave From: cviewe...@aol.com [mailto:cviewe...@aol.com] Sent: Wednesday, January 22, 2014 10:10 PM To: lwillis...@yahoo.com; quad-list@eskimo.com Subject: Re: [QUAD-L] Misc. Same place I had my sore. The wound vac. made it worse. The only way to heal it is to keep off it completely. It took me 6 months but it did heal. I would go to the wound clinic once a week. It was so slow but it worked. I still keep off it when I can, but now that it is healed I am up most of the day and I use a roho in my chair all the time. The clinic always said to eat lots of protein. I tried not to eat big meals and I did loose weight and when hungry I ate a few almonds. I hope this helps. Rose In a message dated 1/22/2014 8:29:27 P.M. Eastern Standard Time, _lwillis821@yahoo.com_ (mailto:lwillis...@yahoo.com) writes: I made the comment several months ago that Jim Lubin was a hell of a man. I think my point is proven. Jim, I wish I had half your willpower and strength. Regarding a wound vac, they work great if you can keep them sealed. I have a sore on my tailbone that won't heal. It's right at the top of my butt crack though, and it's just impossible to seal across the valley. All suggestions welcome. Sent from my iPad
Re: [QUAD-L] Wound care
Thank you so much for sharing this information. I pray that you heal quickly. Dana C4-5 complete 40 years in July. how many years has it been for you. In a message dated 1/24/2014 10:55:05 A.M. Central Standard Time, gah17...@aol.com writes: With the discussion on the site, I thought I would send this again. Quite lengthy but I feel it is important. I have a friend who is charge nurse in a wound clinic and deals with the latest technology in wound healing. I feel that it would be wise to print this information, research it, and put it in use when needed. I am a bullhead and almost needed a 2x4 along my head to try using tea on my skin. I'm a believer. Here goes: I had an area in the groin area, measured 1 inch long and 1/2 wide, with little depth. Our normal treatment was washing the area with tea to change the pH in the area, applying Neosporin or something similar, apply zenaderm and then bag balm. The healing went back and forth, sometimes getting better then stepping back. Well, after hunting season I called a friend, RN at the local wound care center, to give us some ideas. The area first opened in August due to an attendant not seating me correctly. After looking at the area my friend suggested a treatment that they are using at the wound center. Many of us will stay with something that is tried and true, but we were going down that path and it did not work so let's try the new stuff. She recommended using a new dressing with Safetac technology. ( http://www.molnlycke.com/us/Wound-Care-Products/US/Safetac-Technology/ ). The dressing is called Mepilex Border dressing, _( http://molnlycke.com/Global/Wound_Care_Products/UK/Product%20Sheets/Advanced/Mepilex%20Border.pdf_ (http://molnlycke.com/Global/Wound_Care_Products/UK/Product%20Sheets/Advanced/Mepilex%20 Border.pdf) ) similar to what I have known as mini island dressing. The difference between the two dressings is the Border Dressing uses a tape that is silicon based and does not damage the skin when removed or when you shift weight. The border dressing has a telfa style center but is very thin. A normal dressing would have bunched in this area and the border dressing does bunch to some extent, but less than the island dressing and is much less a problem. Everyone is aware of the white skin that surrounds a wound as well as whiteness in the center of the wound. The whitish film that is in the center of the wound is called bioberden A product called acticoat, was placed on the area then covered it with the border dressing. Although manufacturer states that it can remain on seven days she recommends only three or four days. The acticoat contains silver which helps to remove the white area and keep the area free of bacteria. After the wound is clearer of bioberden, we discontinued using acticoat and started to use another product Puracol AG+ which also has silver in the product. The Puracol was covered with the Border dressing and remained on three or four days. Puracol is a collagen product ( http://www.allegromedical.com/wound-care-c541/puracol-plus-ag-wound-dressing-with-silver-p557629.html ) the collagen is absorbed into the wound and promotes healing. We however did run into one problem. We were able to get a few samples on the border dressing but found that the pharmacies and medical supply centers in our area did not handle the product. Needing a dressing to keep Puracol in place we used Extra thin Hydrocolloid dressing a dressings similar to DuoDerm. Big mistake! This dressing although very thin folded inward and bunched on a lump, tearing the skin and causing yet another open area. The unfortunate part is that the original area was almost healed by this point and now we are working with a new area in an area that is even more likely to bunched up any bandage that is applied. We are using the border dressing and it is staying in place with the help of Medfix tape. I believe that the new procedures reduce the healing time. The original area which was open for approximately 4 months healed within two-three weeks. As I started to search the Internet to purchase the border dressing and Puracol AG+, IMPORTANT MUST BE AG+(with silver), I found some prices ridiculous. One vendor had the border dressings at a price of $75 but with a little searching I found them for $25. The same was true for the Puracol. In addition we will be using the silicone tape ( http://www.molnlycke.com/us/Wound-Care-Products/Product-Selector---Wound-division/Tabs/Products/Mepita c/ ) instead of the Medfix tape. Another tip for us that get yeast infections in the groin area, body folds and under breasts. I was prone to yeast infections and my friend also gave me a lesson. A yeast infection will remain in the skin 2 weeks after any visual signs are gone. I smell a yeast infection before
Re: [QUAD-L] Power chair questions
My wheelchair seating is coming tomorrow but they never seem to get things right because my left leg was broken and it is 3 to 4 inches shorter. I do like the chair most comfortable chair my life my very first one because it was a more expansive model which they won't cover it is C 500 when my insurance was primary and aloof In a message dated 1/22/2014 1:17:28 P.M. Central Standard Time, swl...@gmail.com writes: The only compliant I have with my m300 is the leg rest setup. The pads that support the calves pushed my feet too far forward. My feet wouldn't rest against the heel supports, so I ended up just removing the calf support pads. I wish I'd gone with swing away feet rests, it folds back and the ffoot plate flips up, but still gets in the way during transfers. The headrest is pretty easily adjustable. Over all it's been a pretty solid chair. On Tue, Jan 21, 2014 at 1:05 PM, Danny Espinoza _Danny@immortaldesigns.co_ (mailto:da...@immortaldesigns.co) wrote: To be clear currently I've got a Quantum 6000z that I'm unhappy with and I'm looking at getting a Permobil m300 Original Message Subject: Re: [QUAD-L] Power chair questions From: Don Smith _scamper2695@att.net_ (mailto:scamper2...@att.net) Date: Tue, January 21, 2014 10:13 am To: Danny Espinoza _Danny@ImmortalDesigns.co_ (mailto:da...@immortaldesigns.co) , _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) I demo'ed the m300 mid wheel drive last spring, it's much better then my 13 year old quickie p300. As for the head rest I can get by with a basic one that we adjust once and leave it, I only need it when I tilt back. I didn't have any issues with my knees spreading like they do with my quickie. I wonder if the footrest was set low enough for you. The only issue I have with the m300 is low ground clearance, I live in town and had no problems but I'm thinking about driving again and need to find out about any special lockdown that may be needed. Don From: Danny Espinoza _Danny@ImmortalDesigns.co_ (mailto:da...@immortaldesigns.co) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Monday, January 20, 2014 7:16 PM Subject: [QUAD-L] Power chair questions I keep having problems with my Quantum 6000z and was told in may I will be able to submit for a new power chair. I'm very happy about that! I've got some questions for you guys about it... I'm thinking about getting a permobil m300 which is a mid wheel chair. The question I've got is about the head and foot rest systems. My chair right now the feet are together which causes my knee's to open up which I hate. On my current chair I've been using a gate belt around my thighs to bring my knees closer together. I think this was due to my feet having to be together due to the foot plate being one small piece of metal with ankle straps and not being two plates that my feet can be separated. My headrest never really has been comfortable because my head doesn't really rest on it... It touches it if I recline a little though so I've reclined the seat back and chair a little so my neck doesn't wear out and get sore so fast. I need to make decisions on which headrest, foot rests, arm rests and seat I want and was curious which you guys recommend? Also what do you guys think of the permobil m300? Thanks in advance! -Danny
Re: [QUAD-L] Days in bed 2013
Jim, you should be able to go out patient and get the wound vacuum and have a visiting nurse take care of it. I got mine while hospitalized because of my foot surgery that went wrong. I think they would do them outpatient. I would ask my doctor and maybe search for a Dr. that would do outpatient. I had mine for two months and the agency took care of it. I have gotten a pic line to my heart for IVs with Pseudomonas in my lungs. I would think they would be equal procedures. I had to have skin from my stomach use for my heel, that was also outpatient. No I take that back I had to stay overnight. I hate going in the hospital as they never know how to do my care. It is a nightmare. Does anyone have the same experiences. Just my experiences. Dana In a message dated 1/22/2014 1:31:26 P.M. Central Standard Time, jlu...@eskimo.com writes: I didn't get why I couldn't get a wound vac at home without going to the hospital first. Oh well, I have night nurses (due to being on the vent) and they clean and change the packing every morning. On Wed, Jan 22, 2014 at 5:28 AM, _wheelchair@aol.com_ (mailto:wheelch...@aol.com) wrote: Jim, your situation must be most unique. I know of dozens of Quads, using wound vacs at home. Some are changed twice a day, once a day and sometimes, once every 3 days, by a nurse. Wound cleaning is usually done at a hospital or clinic so the medical doctor/wound specialist can observe progress. Some nurses take phone/pictures of the wound with each change in dressing and convey it to the doctors. Best Wishes In a message dated 1/21/2014 8:40:52 P.M. Central Standard Time, _jlubin@eskimo.com_ (mailto:jlu...@eskimo.com) writes: they briefly discussed a wound vac, but it would have involved a stay in the hospital. I'm too paranoid of getting any infections going to a hospital. This year makes 25 years and the only respiratory infection I have ever had was year 1 while in rehab. Over the year it went from 2.7cm deep to 1cm deep now. Might heal faster if I completely get off it but I have not been, just on the alternating air mattress. On Tue, Jan 21, 2014 at 4:35 PM, _wheelchair@aol.com_ (mailto:wheelch...@aol.com) wrote: Sorry to hear that Jim. Are you also using a wound vac? Best Wishes In a message dated 1/21/2014 6:33:42 P.M. Central Standard Time, _jlubin@eskimo.com_ (mailto:jlu...@eskimo.com) writes: I've been in bed since December 2012. I've only been getting out of bed into my chair once a month to go to the wound clinic. I use to hate being in bed but have realized what the problem was that with my adaptive input not setup to use from bed I couldn't do anything. Now that I can use the computer from bed and control the tv/dvr using a slingbox, I can do everything I would normally be doing from bed. No need to get dressed, do transfers in and out of bed saving about an hour a day to do something else. My would was small but deep. I was given the option of flap surgery but that would require going to the hospital then a nursing home. No thanks. So it's healing slowly, no infections. My nurses change the packing in the wound daily. Jim
Re: [QUAD-L] Days in bed 2013
Jim, I know what you mean. I had to get my wound VAC two years ago in the hospital. You must have a lot of patience to be confined to the in bed, I'm so thankful that you have your equipment so you can operate everything. We can only survive so long without the Internet. I feel that way at least. It keeps me sane, if I have a sore. You are so awesome, Jim. I will pray for you. I can imagine what life would be like without the quad list. It is such an amazing site and I'm so grateful to you and the Lord that allowed you to survive, and bei such inspiration to the world of quads. Thank you Jim Dana In a message dated 1/21/2014 9:19:04 P.M. Central Standard Time, ddh...@sbcglobal.net writes: Wow, Jim, sure hope you get better soon, I'd hate to get stuck in bed, I only have a Queen regular bed...Sometime I may need to get a bed that the head with lift up and down and an alternating pressure mattress, So far I just sleep with a pillow under my rear keeping me turned and half thru the night, I get turned the other way. Dan H** From: Jim Lubin jlu...@eskimo.com To: wheelch...@aol.com wheelch...@aol.com Cc: James Lubin jlu...@eskimo.com; Bobbie Humphreys bobbiehumphre...@gmail.com; quad-list@eskimo.com Sent: Tuesday, January 21, 2014 8:40 PM Subject: Re: [QUAD-L] Days in bed 2013 they briefly discussed a wound vac, but it would have involved a stay in the hospital. I'm too paranoid of getting any infections going to a hospital. This year makes 25 years and the only respiratory infection I have ever had was year 1 while in rehab. Over the year it went from 2.7cm deep to 1cm deep now. Might heal faster if I completely get off it but I have not been, just on the alternating air mattress. On Tue, Jan 21, 2014 at 4:35 PM, _wheelchair@aol.com_ (mailto:wheelch...@aol.com) wrote: Sorry to hear that Jim. Are you also using a wound vac? Best Wishes In a message dated 1/21/2014 6:33:42 P.M. Central Standard Time, _jlubin@eskimo.com_ (mailto:jlu...@eskimo.com) writes: I've been in bed since December 2012. I've only been getting out of bed into my chair once a month to go to the wound clinic. I use to hate being in bed but have realized what the problem was that with my adaptive input not setup to use from bed I couldn't do anything. Now that I can use the computer from bed and control the tv/dvr using a slingbox, I can do everything I would normally be doing from bed. No need to get dressed, do transfers in and out of bed saving about an hour a day to do something else. My would was small but deep. I was given the option of flap surgery but that would require going to the hospital then a nursing home. No thanks. So it's healing slowly, no infections. My nurses change the packing in the wound daily. Jim
Re: [QUAD-L] Days in bed 2013
That is truly amazing Jim. Congratulations! Dana In a message dated 1/21/2014 8:40:56 P.M. Central Standard Time, jlu...@eskimo.com writes: they briefly discussed a wound vac, but it would have involved a stay in the hospital. I'm too paranoid of getting any infections going to a hospital. This year makes 25 years and the only respiratory infection I have ever had was year 1 while in rehab. Over the year it went from 2.7cm deep to 1cm deep now. Might heal faster if I completely get off it but I have not been, just on the alternating air mattress. On Tue, Jan 21, 2014 at 4:35 PM, _wheelchair@aol.com_ (mailto:wheelch...@aol.com) wrote: Sorry to hear that Jim. Are you also using a wound vac? Best Wishes In a message dated 1/21/2014 6:33:42 P.M. Central Standard Time, _jlubin@eskimo.com_ (mailto:jlu...@eskimo.com) writes: I've been in bed since December 2012. I've only been getting out of bed into my chair once a month to go to the wound clinic. I use to hate being in bed but have realized what the problem was that with my adaptive input not setup to use from bed I couldn't do anything. Now that I can use the computer from bed and control the tv/dvr using a slingbox, I can do everything I would normally be doing from bed. No need to get dressed, do transfers in and out of bed saving about an hour a day to do something else. My would was small but deep. I was given the option of flap surgery but that would require going to the hospital then a nursing home. No thanks. So it's healing slowly, no infections. My nurses change the packing in the wound daily. Jim
Re: [QUAD-L] Re: quad site
I am so sorry, for both of your illnesses. I hope you get to feeling better. Bronchitis is Hard on quads and we take much longer to recover. Thank God you're feeling better. I'm glad you're both able to post again. Dana In a message dated 1/17/2014 1:44:50 P.M. Central Standard Time, wheelch...@aol.com writes: Welcome Back! Best Wishes In a message dated 1/17/2014 1:22:42 P.M. Central Standard Time, nlg52...@yahoo.com writes: I've had bronchitis and haven't been online. Actually, haven't done much of anything ... starting to feel human again! Thank God. On Thursday, January 16, 2014 6:58 PM, KK Batte kkba...@outlook.com wrote: Sorry guys but I got sick with flu type illness Christmas. Finish the antibiotics tomorrow still not better. GRRR!! KKB Date: Thu, 16 Jan 2014 11:24:16 -0800 From: scamper2...@att.net Subject: Re: [QUAD-L] Re: quad site To: wheelch...@aol.com; gah17...@aol.com CC: quad-list@eskimo.com Their either out and about or frozen in snow with no internet or just to cold to get out of a nice warm bed From: wheelch...@aol.com wheelch...@aol.com To: gah17...@aol.com Cc: quad-list@eskimo.com Sent: Thursday, January 16, 2014 10:17 AM Subject: [QUAD-L] Re: quad site Not much happening here Glenn. I suppose that summer came early this year and everyone is out n about trying to improve their suntans. Hope you are ok. Best Wishes In a message dated 1/16/2014 12:12:28 P.M. Central Standard Time, gah17...@aol.com writes: Hey Wheels, Has the quad site have many posts over the past 2 weeks? I'm not getting anything. Isn't there a way to look at archives? Thanks, Glenn Henry
Re: [QUAD-L] Re: quad site
I am so sorry, for both of your illnesses. I hope you get to feeling better. Bronchitis is Hard on quads and we take much longer to recover. Thank God you're feeling better. I'm glad you're both able to post again. Dana In a message dated 1/17/2014 1:44:50 P.M. Central Standard Time, wheelch...@aol.com writes: Welcome Back! Best Wishes In a message dated 1/17/2014 1:22:42 P.M. Central Standard Time, nlg52...@yahoo.com writes: I've had bronchitis and haven't been online. Actually, haven't done much of anything ... starting to feel human again! Thank God. On Thursday, January 16, 2014 6:58 PM, KK Batte kkba...@outlook.com wrote: Sorry guys but I got sick with flu type illness Christmas. Finish the antibiotics tomorrow still not better. GRRR!! KKB Date: Thu, 16 Jan 2014 11:24:16 -0800 From: scamper2...@att.net Subject: Re: [QUAD-L] Re: quad site To: wheelch...@aol.com; gah17...@aol.com CC: quad-list@eskimo.com Their either out and about or frozen in snow with no internet or just to cold to get out of a nice warm bed From: wheelch...@aol.com wheelch...@aol.com To: gah17...@aol.com Cc: quad-list@eskimo.com Sent: Thursday, January 16, 2014 10:17 AM Subject: [QUAD-L] Re: quad site Not much happening here Glenn. I suppose that summer came early this year and everyone is out n about trying to improve their suntans. Hope you are ok. Best Wishes In a message dated 1/16/2014 12:12:28 P.M. Central Standard Time, gah17...@aol.com writes: Hey Wheels, Has the quad site have many posts over the past 2 weeks? I'm not getting anything. Isn't there a way to look at archives? Thanks, Glenn Henry
Re: [QUAD-L] Re: quad site
I am watching the doctors in it recommends for everyone to get the flu shot. It can last for one month. Please think about it. It will not cause the flu, you will be protected two weeks after you get the shot. Dana In a message dated 1/17/2014 1:22:42 P.M. Central Standard Time, nlg52...@yahoo.com writes: I've had bronchitis and haven't been online. Actually, haven't done much of anything ... starting to feel human again! Thank God. On Thursday, January 16, 2014 6:58 PM, KK Batte kkba...@outlook.com wrote: Sorry guys but I got sick with flu type illness Christmas. Finish the antibiotics tomorrow still not better. GRRR!! KKB Date: Thu, 16 Jan 2014 11:24:16 -0800 From: scamper2...@att.net Subject: Re: [QUAD-L] Re: quad site To: wheelch...@aol.com; gah17...@aol.com CC: quad-list@eskimo.com Their either out and about or frozen in snow with no internet or just to cold to get out of a nice warm bed From: wheelch...@aol.com wheelch...@aol.com To: gah17...@aol.com Cc: quad-list@eskimo.com Sent: Thursday, January 16, 2014 10:17 AM Subject: [QUAD-L] Re: quad site Not much happening here Glenn. I suppose that summer came early this year and everyone is out n about trying to improve their suntans. Hope you are ok. Best Wishes In a message dated 1/16/2014 12:12:28 P.M. Central Standard Time, gah17...@aol.com writes: Hey Wheels, Has the quad site have many posts over the past 2 weeks? I'm not getting anything. Isn't there a way to look at archives? Thanks, Glenn Henry
[QUAD-L] Re: Tom Perez He Stole Christmas - A CALL FOR ADAPT ACTION!
In a message dated 12/23/2013 11:20:22 A.M. Central Standard Time, bdarl...@cdrnys.org writes: Watch this: http://youtu.be/ibJDfqXrj04 ...and TAKE ACTION!! Hats off to the amazing ADAPT of Texas Chorus and ADAPT Choirmaster David Wittie who crafted the very witty lyrics and alert! From: David Wittie [davidwit...@yahoo.com] Subject: Tom Perez He Stole Christmas - A CALL FOR ADAPT ACTION! This Holiday Call for Action is brought to you by ADAPT's Workforce Workgroup. Please forward! Tom Perez has been naughty, not very nice. Basically he told ADAPT to Go suck on ice! You see, ADAPT wants improvements to some DOL regs. Tom Perez told ADAPT to Go suck on eggs! But Tom, our attendants want good wages and we want to live on our own. Tom responded sternly Get OFF of my lawn! Tom never had any interest in meeting ADAPTs goals. Now we must rake Tom over the coals. So send Tom some coal, its not very hard. It matters not if theyre lumps, briquettes or charred. Put the coal and your own message in a bag or a box. 'Tis the worst Christmas gift since underwear and socks. Send all of the above to the address below. To: Tom Perez 7230 Minter Place Takoma, Maryland 20912 it must go. But, if sending snail mail is what you dont love, email pictures of coal to thomas.pe...@dol.gov Now, brought to you from ADAPTs folks down in Texas (ADAPT really knows how to put the X in Xmas!), here's a video that we hope you all will treasure. Please use the link below for your viewing pleasure. http://youtu.be/ibJDfqXrj04 NATIONAL ADAPT MAILING LIST - Adapt Community Choice Act List http://www.adapt.org
Re: [QUAD-L] That Deer Hunter Story
That is a wonderful idea, I would love to read your book. Dana In a message dated 11/18/2013 2:02:16 P.M. Central Standard Time, ddh...@sbcglobal.net writes: That sounds like a great idea Ron, let us know when you get it completed, it is a very good subject and could perhaps even be a book? thanks. Dan ** From: RONALD L PRACHT r.pra...@sbcglobal.net To: quad-list@eskimo.com quad-list@eskimo.com Sent: Monday, November 18, 2013 1:46 PM Subject: Re: Fwd: [QUAD-L] That Deer Hunter Story Im going to write a big story about just what your talking about Dan. What about the quads that don't have 4 sisters to take care of them around the clock. Nobody to fly with them on trips to play rugby or let alone make them a decent meal. What about the guy that was refused help at voc rehab because he was deemed to be a bad risk. We all want the best but sadly few many people are left out, trying to find a meal and someone to do a bowell routine a couple times a week, maybe a shower once a week. Who can get someone do do an every day bowell routine, lol. Im going to write a nice story about several quads I know and how their lives have varied. Ron From: Danny Hearn ddh...@sbcglobal.net To: Don Price donpric...@yahoo.com; lwillis...@yahoo.com lwillis...@yahoo.com; quad-list@eskimo.com quad-list@eskimo.com Sent: Monday, November 18, 2013 12:57 PM Subject: Re: Fwd: [QUAD-L] That Deer Hunter Story Sure we all want to live and enjoy life even as a quad, but what if family does not care enough to sacrifice being a caregiver-- or with healthcare costs getting out of hand the person does not qualify for paid caregiver help??? Although I do believe many of us have as much right to life as the murderers and hard core criminals in our prisons that cost our government billions of dollars for their care each and every year. (do any of you agree or have thoughts on this??) Dan H*** From: Don Price donpric...@yahoo.com To: lwillis...@yahoo.com lwillis...@yahoo.com; quad-list@eskimo.com quad-list@eskimo.com Sent: Monday, November 18, 2013 11:38 AM Subject: Re: Fwd: [QUAD-L] That Deer Hunter Story Nice job, Ben. It's scary to me that the better dead than disabled viewpoint still exists. Sigh. Don. On Monday, November 18, 2013 7:28 AM, lwillis...@yahoo.com lwillis...@yahoo.com wrote: Excellent article, Ben. Thought provoking and well-written. Sent from my iPad Begin forwarded message: Resent-From: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) From: _wheelchair@aol.com_ (mailto:wheelch...@aol.com) Date: November 17, 2013 at 8:56:10 PM EST To: _bmattlin@earthlink.net_ (mailto:bmatt...@earthlink.net) , _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: Re: [QUAD-L] That Deer Hunter Story Thanks Ben. Suicides, DNR's and a contributing livestyle always seem to bother me. But in the end, its a choice. their choice. And some make mistakes. Thanks Again. Best Wishes In a message dated 11/16/2013 3:23:43 P.M. Central Standard Time, _bmattlin@earthlink.net_ (mailto:bmatt...@earthlink.net) writes: For what it's worth, I was asked to contribute a blog about this story, which you can find here: http://www.agingwithdignity.org/mattlin.php __ BEN MATTLIN http://www.benmattlin.com/ http://www.miracleboygrowsup.com/
Re: [QUAD-L] Re: I like Mulberries
Hi Glenn, I will be praying for you about your Tuesday men's prayer meeting. I know it will take a lot of God's support to enable you to do this sorrowfully event. The Lord will be with you and enable you to talk about this important tragedy that you faced and praying for the family of the deer Hunter and help the family to be comforted and protected by the Lord and given his favor to survive this family tragedy. Dana In a message dated 11/17/2013 1:32:24 P.M. Central Standard Time, lwillis...@yahoo.com writes: Wow, what a story. God will give you the strength and the words to say. Guarantee it. Sent from my iPad Begin forwarded message: Resent-From: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) From: _wheelchair@aol.com_ (mailto:wheelch...@aol.com) Date: November 17, 2013 at 2:29:34 PM EST To: _Gah17582@aol.com_ (mailto:gah17...@aol.com) Cc: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: [QUAD-L] Re: I like Mulberries You have our prayers and support. Best Wishes In a message dated 11/17/2013 1:23:49 P.M. Central Standard Time, _Gah17582@aol.com_ (mailto:gah17...@aol.com) writes: Wheels, Just thought I would let you know that your story will lead off my speaking at our Tuesday PM Men's Bible Study. As this story started on the site, I thought how are those parents, when things settle down and there sitting in the quietness somewhere and it hits them what they allowed happen, are they ever going to live with their decision. They are in shock and the wife in my opinion is a selfless total jerk. We need to pray for the family. The next day after hearing about the hunter, a friend that was bright, healthy and a retired Master Sergeant that at one time was in charge of guarding the airport hanger that houses Air Force One, ended his life at the end of an extension cord. In 1976, a young police officer on patrol in our village, saw the father of his best friend, step in front of the car in front of him to commit suicide. The police officer had to pull the drunken idiot from under the ladies car and unsuccessfully perform CPR. He was told by the police department to keep his mouth shut and it will go away in time. Within a year that office quit the force, and soon after committed suicide. I miss my brother, he was a good policeman and friend. Guy's pray for me on Tuesday PM as I talk about this. It will be the first time I spoke in public about suicide. Glenn Henry
Re: [QUAD-L] b care
I also eat oatmeal every day for a fiber one cereal. In a message dated 11/7/2013 1:51:20 P.M. Central Standard Time, jnapp...@msn.com writes: I eat a high fiber diet, but make sure you drink lots of water. Julie Date: Wed, 6 Nov 2013 17:59:05 -0800 From: pl...@yahoo.com To: quad-list@eskimo.com Subject: [QUAD-L] b care what bowel care works for you? i'm almost 1 week w/out. longest w/out has been 2-3 weeks. i've tried a lot in past 27 yrs, wondering what works for others. Patricia L. Brown-Tulee pl...@yahoo.com while adding years to your life, add life to your years =
Re: [QUAD-L] b care
I just eat the regular. It's always better to add real fruit In a message dated 11/7/2013 2:24:20 P.M. Central Standard Time, jnapp...@msn.com writes: I think the original Fiber One cereal is the best because you don't have to eat a lot to get a lot of fiber. From: daa...@aol.com Date: Thu, 7 Nov 2013 14:56:40 -0500 Subject: Re: [QUAD-L] b care To: jnapp...@msn.com; quad-list@eskimo.com I also eat oatmeal every day for a fiber one cereal. In a message dated 11/7/2013 1:51:20 P.M. Central Standard Time, jnapp...@msn.com writes: I eat a high fiber diet, but make sure you drink lots of water. Julie Date: Wed, 6 Nov 2013 17:59:05 -0800 From: pl...@yahoo.com To: quad-list@eskimo.com Subject: [QUAD-L] b care what bowel care works for you? i'm almost 1 week w/out. longest w/out has been 2-3 weeks. i've tried a lot in past 27 yrs, wondering what works for others. Patricia L. Brown-Tulee pl...@yahoo.com while adding years to your life, add life to your years = =
Re: [QUAD-L] Suprapubic Catheter
Sometimes even we get second opinions problems will arise. I have a ileal conduit I don't know which ones would cause fewer UTIs. That's a good question. I wish you also a blessed day. Dana In a message dated 11/5/2013 4:46:42 A.M. Central Standard Time, ladyno...@aol.com writes: thank you Dana, for your advice. That's exactly what I'm going to do Have a Blessed Day, Naomi -Original Message- From: Dana Wray daa...@aol.com To: nichole rohling zoocr...@windstream.net Cc: Naomi Hudson ladyno...@aol.com; quad-list@eskimo.com quad-list@eskimo.com Sent: Sun, Nov 3, 2013 8:26 pm Subject: Re: [QUAD-L] Suprapubic Catheter Hi Naomi, Second opinions are always advisable and Necessary . Dana Sent from my iPhone On Nov 2, 2013, at 12:00 PM, nichole rohling _zoocrew1@windstream.net_ (mailto:zoocr...@windstream.net) wrote: I’ve had an indwelling cath (16 french) for over 15 years……..just moved up to a 18 from a 16 because of it stopping up and some leakage (minimal). I say wait and get a 2nd opinion. Nicki c5/6 From: Naomi Hudson [mailto:ladyno...@aol.com] Sent: Friday, November 01, 2013 9:47 PM To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: [QUAD-L] Suprapubic Catheter Help I need your advice, I have had an indwelling Foley catheter for the past eight years. My urologist keeps telling me eventually, my urethra will become eroded and it will start to leak. This will cause me to need urinary diversion surgery, which I've told him I'm not going to have unless it's absolutely, positively necessary, because it's so invasive. So now he's telling me my next best option is a suprapubic catheter. Then he tells me that he may have to give me Botox in my bladder to keep my urethra from leaking. So I'm like, why not wait until my urethra starts to leak and then give me the Botox and a suprapubic catheter. I have a return visit in three weeks to let him know what I'm going to do. Any suggestions? Have a Blessed Day, Naomi
Re: [QUAD-L] Suprapubic Catheter
What is the difference between urostomy and ileal conduit. I have a ileal conduit, because they had to remove my bladder because of bladder cancer. I was in the hospital for months. Dana. To me it's easier than changing the indwelling catheter. In a message dated 11/3/2013 1:45:52 P.M. Central Standard Time, bobbiehumphre...@gmail.com writes: I had an indwelling catheter for 26 years and then I had to have a urostomy done because my urethra was all stretched out beyond repair. I was at the point where I was changing my cath 3 to 4+ a WEEK! Which, of course, caused quite a few UTI's. The Urostomy surgery was HELL I won't sugarcoat it, it was THE HARDEST surgery I ever went through. The recovery was twice as hard as the surgery. In the end, I wish I had done it sooner but I was he'll bent against it unless I absolutely HAD to. Bobbie Smile Everyday On Nov 2, 2013, at 1:00 PM, nichole rohling _zoocrew1@windstream.net_ (mailto:zoocr...@windstream.net) wrote: I’ve had an indwelling cath (16 french) for over 15 years……..just moved up to a 18 from a 16 because of it stopping up and some leakage (minimal). I say wait and get a 2nd opinion. Nicki c5/6 From: Naomi Hudson [mailto:ladyno...@aol.com] Sent: Friday, November 01, 2013 9:47 PM To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: [QUAD-L] Suprapubic Catheter Help I need your advice, I have had an indwelling Foley catheter for the past eight years. My urologist keeps telling me eventually, my urethra will become eroded and it will start to leak. This will cause me to need urinary diversion surgery, which I've told him I'm not going to have unless it's absolutely, positively necessary, because it's so invasive. So now he's telling me my next best option is a suprapubic catheter. Then he tells me that he may have to give me Botox in my bladder to keep my urethra from leaking. So I'm like, why not wait until my urethra starts to leak and then give me the Botox and a suprapubic catheter. I have a return visit in three weeks to let him know what I'm going to do. Any suggestions? Have a Blessed Day, Naomi =
Re: [QUAD-L] quad gut
Congratulations Greg. Mine has stayed under control with suggestions from Dr. Oz. I eat oatmeal with blueberries every day and cinnamon. I also take ultimate raspberry key tones before each meal. In a message dated 10/27/2013 5:01:58 P.M. Central Daylight Time, g...@eskimo.com writes: After getting an ostomy my quad gut has gone down at least 75%. I was worried about a bulge resting on top of a bloated stomach showing a lot. But my stomach is a lot flatter now. now I hope it just stays this way. Greg
Re: [QUAD-L] I Hate cold weather
Mine is also. Dana In a message dated 10/26/2013 6:24:14 P.M. Central Daylight Time, da...@immortaldesigns.co writes: Yup mine is usually between 97.5 98.6. Any lower than 97.5 and I start to tense up, hurt and usually ask for a blanket/warm clothes/heat pack. -Danny From: greg [mailto:g...@eskimo.com] Sent: Saturday, October 26, 2013 3:10 PM To: Quad-list Subject: Re: [QUAD-L] I Hate cold weather almost all quads I know get cold a lot. I'm sure that you are like me and your body temperature is a degree or two below normal. When I take my temp my average is 96.5 to 97.5. Greg
Re: [QUAD-L] I Hate cold weather
I agree with you. Ron. I get cold when it is 70°. I prefer 77°. Ha ha. Already wearing sweaters and long-socks. I don't know if they have these for quad fellows, but I always buy over the knee socks. Our legs are thin so they go clear up to your hips. I have never worn to tight socks that are for circulation. They come in colors too. They are to try. I like a loser warm sock. What do the rest did you wear to keep warm. Sometimes I will wear a scarf in the house if I get cold. They have so many fur scarves out now. I don't think there would be anything wrong with a guy wearing a warm scarf. Dana. I don't even like fall. I prefer the 80° weather all year round. I usually buy Hue. Anytime I see them. I buy some more because you never know when they are not going to be in style and you cannot find them anymore. In a message dated 10/24/2013 6:02:34 P.M. Central Daylight Time, r.pra...@sbcglobal.net writes: The cold will test any quad. Im already using a sock hat and double shirts and its not november yet. The 73 degrees in the house feels cold to me. Ron From: Derrick Winegardner whe...@cvn.net To: quad-list@eskimo.com Sent: Thursday, October 24, 2013 5:57 PM Subject: Re: [QUAD-L] I Hate cold weather Yep, my furnace has been running all day. I'm ready to head south. Derrick in PA On 10/24/2013 5:33 PM, _Gah17582@aol.com_ (mailto:gah17...@aol.com) wrote: It is cold in Pennsylvania! Glenn Henry G.A.Henry Radio 100 Mill Street Washington Boro, PA 17582
[QUAD-L] does anyone watch scandal fine ABC on Thursday at 9 PM
Just wanted to know if anyone like the show called scandal. I have gotten into it. I know it's kind of like a soap opera. It's really funny how the presidents wife looks like Monica Lewinsky. Gray's anatomy is on at 8 PM on ABC.. Thoughts anyone! Dana
Re: [QUAD-L] Few Quad helpful things i learned for us.
Great suggestions Johnny. Dana In a message dated 10/19/2013 12:02:13 P.M. Central Daylight Time, curlyle...@verizon.net writes: Heres a few things I learned through my quad years that may help. If you ever drop something on the floor and want to pick it up. You first have to have a handle with little hook on end. ( you can make your own.] Then you drop a little plastic bag that has two handles on it near the droped item. [you get a bag at any store ] Then you push the dropped item into the bag and hook the two or one handle up towards you to retreve. Also you can have a roll of masking tape on end of roll where you can even pick up a quarter or even a marble. Its that easy. Its funny when you pick it up and others are not around they are amazed wondering how you did it. My other item for us [always ] cold quads during cold winters is to buy a little heating pad and slide it under you pillow case. You can just click what feels good , low med or high. We have feeling from our neck above so we can tell if it gets to hot. Also it has automatic shutoff after a certain time. I love it. Take care johnny lewis on facebook.
Re: [QUAD-L] anxiety
Hi Bobbie, I am so sorry dancing caused a sore. Was your cushion not inflated enough. I wish they had some kind of warning signal if OUR wheelchair cushions are going flat, because we cannot always tell. I remember reading something about a cushion that did that but I do not remember the name. This was a number of years ago. I remember we were talking about the cushion that is like an alternating mattress but costs about USD4000. I cannot quite remember the name of it now. I was thinking about getting one when the power cord of my laptop got under my bottom and I was in bed for six months. I think you can dance again but just in a different way. It might need to be on slow speed, with no rapid movements. It takes so little to cause skin break down. It takes us so long to heal. I still sleep in a waterbed, which never causes any problems. My brother built a frame underneath so I can use my Hoyer to go under the bed, so I can get out of bed and I use my sliding board to get in bed. I have only had to replace the mattress two times in 25 years. It is so warm also. If you have a sore on one side, you can stay longer on the other side without hurting your skin. Does anyone else use a waterbed? I am anxious to hear everyone's stories about rehab coming home. That was a great question. Dana In a message dated 10/17/2013 2:41:26 P.M. Central Daylight Time, bobbiehumphre...@gmail.com writes: I know what you mean Dan. I just got a brand new power chair with center wheel drive (my first one) and after having it 6 weeks+ I decided to practice dancing. Pete and I like to go to jazz concerts and dance. But by putting the chair in high Greer and going extreme right then left then right again ... I got a super fiscal sore on my butt. Yesterday was 3 weeks and I'll probably be in for another 3 weeks. So, now I can't dance : (. Bobbie Smile Everyday On Oct 17, 2013, at 12:31 PM, Danny Hearn _ddh247@sbcglobal.net_ (mailto:ddh...@sbcglobal.net) wrote: When things are going wrong for a quad it does cause worry and anxiety, my roho lost air under my rear causing a pressure soreman now I feel sick, because little things like that can be a big problem and take tons of time to get better.(plus trying to get it replaced with insurance red tape and etc.) Greg have your doc write a script for a low dose of zanex when getting anxiety, that will help you. good luck, Dan H** From: greg _greg@eskimo.com_ (mailto:g...@eskimo.com) To: quad-list _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Thursday, October 17, 2013 11:04 AM Subject: [QUAD-L] anxiety I'll try this again. It got sent before I was done. I am considering surgery on my pressure wound on my butt. But that would mean 4 to 6 weeks in bed absolutely not getting up. I'm not sure I could do that. Right now I'm trying to stay in bed most of the time, only getting up for a couple hours. My biggest concern is anxiety. It rarely happens, but if I get really overheated or really constipated, I get A.D. Not only do I sweat, headaches, claustrophobic, I get this really bad anxiety. Where I just can't stop worrying about little things. It's only happens about once or twice a year. If that even. Though it happened the other night. Actually two times this week. I think being stuck in bed has helped cause it. I started worrying about my pressure wound, and then I start worrying about totally unrelated things. Then I start to worry about what if I start to worry. What if a week after the surgery it happens again. When it happens nothing seems to help unless I get up. Once I get over it I think to myself how foolish it was to worry about that. The Dr. gave me something for anxiety once, but by the time I needed it it had expired. It may take two or three times longer to heal up, but I can get up for one or two hours a day. Or do I just risk it, have the surgery, and hope I don't have any issues. My wound was on its way to being healed up when the cushion went flat, then when I had my ostomy surgery it took twice as long as it was supposed to and being on the surgery table caused the wound to be set back a little more. It's hard to figure out what to do. Greg =
Re: [QUAD-L] Survival Manual Suggestions
Congratulations Aaron with your find work which newly injured spinal cord injury patients. Dana In a message dated 10/8/2013 9:08:23 P.M. Central Daylight Time, aman...@gmail.com writes: Here in San Antonio, I'm on a list for the SCI units to call when they have a new SCI patient getting ready to go home. I act as a mentor and provide the patient and family as much advice as requested. If it's not already in place, push for it, do it yourself. I tried creating a catch-all book, but it's difficult to encompass all ages and all levels of injury. I encourage all of you here with 5 or more years experience, reach out to your local CIL, SCI units, rehabs. Be the mentor you wish you'd had upon going home. Aaron Mann On Wed, Oct 2, 2013 at 1:42 PM, Don Price _donprice63@yahoo.com_ (mailto:donpric...@yahoo.com) wrote: GREAT suggestions ALL! Thank you [and keep 'em coming]! Don. From: Danny Hearn _ddh247@sbcglobal.net_ (mailto:ddh...@sbcglobal.net) To: RONALD L PRACHT _r.pracht@sbcglobal.net_ (mailto:r.pra...@sbcglobal.net) ; _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Wednesday, October 2, 2013 10:53 AM Subject: Re: [QUAD-L] Survival Manual Suggestions Wow, Ron- you summed it up pretty good ! when I got injured they had a hospital class that taught us a lot of those things but I think it depends what area or state you live as to what they know or teach you. I was like you and had to go the 1st - 3 years with bed baths, then I had to get a supra-pubic catheter and voc-rehab set me up with a contractor that helped a bit with my bathroom remodel and overhead ceiling bed lift. (they paid a small portion and I refinanced my home to pay the rest ) Our life got soo much better after that ! thank god for any resourses that can help in any ways or give suggestions. Dan H.*** From: RONALD L PRACHT _r.pracht@sbcglobal.net_ (mailto:r.pra...@sbcglobal.net) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Tuesday, October 1, 2013 9:37 PM Subject: Re: [QUAD-L] Survival Manual Suggestions The first thing any therapist or doctor has to address with a newly injured person is thebut Im going to walksyndrome. People naturally are scared to do anything that may be inferring that they are accepting the fact they may not walk again. The best way to deal with that is to go around the issue. The main things people need to do right out of the gate are Figure out if current living arrangement can accomadate a wheelchair, if so start findind resources to build a ramp Apply for social security Widen doors at current house, bedroom and bathroom are a must..possibly drop hinges. If possible start looking into installing a roll in shower.( I had five years of hell without one) Get all need handicap equipment ordered b4 leaving hospital Learn about dysreflexia and how to prevent urinary tract infections, pressure sores. Make sure family is trained on help with catherizations, bowell routines, transfers Learn as much as you possibly can b4 you leave the hospital Once the person is out of rehab there will be a shock period to learn how to live in the real world in a chair. The hospital setting is set up for a paralyed individual, its scary at first going home which is normal. Start investigating going to school and getting a van to drive or ride in Ron From: Don Price _donprice63@yahoo.com_ (mailto:donpric...@yahoo.com) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Tuesday, October 1, 2013 1:09 PM Subject: [QUAD-L] Survival Manual Suggestions Think back to right after your accident; you and your family were in the hospital, clueless, trying to figure out what was going to happen and how life was going to be from now on. It was a crazy, scary, emotional time for everyone: you, your family and your friends. Imagine if someone were to hand you--or more likely your family--a Disability Survival Manual that was intended to give you some advice from people who had been there before. What would it include? My Center for Independent Living (CIL) is currently working on such a manual. I'm tasked with writing an article on things that FAMILY and FRIENDS should know. So, I'm reaching out to you, my friends on quadlist, and asking for your input. What do you wish someone had told your family and friends right after your injury? I APPRECIATE any input you may have. Don Tempe, AZ C5-6 32 years
Re: [QUAD-L] Whats that white plastic you heat called?
I know. They use it when he make my splints. Maybe you could call someone that works in orthotics and find out where they get their material? He must've felt lost with no solution. Dana. In a message dated 10/9/2013 10:35:42 P.M. Central Daylight Time, r.pra...@sbcglobal.net writes: Im trying to find something and I need a piece of that white plastic you heat in boiling water and it molds to hand or whatever you want. Its a rehab product possibly sold by like sammons- preston? I forgot what its called. On a side note, I was told that an old friend of mine commited suicide a couple days ago using a pistol to the head. The man was healthy and walked every day of his life. Isnt it amazing we here on the list fight everyday to live against many odds but yet some people throw in the towell with minimal issues. Life is crazy. ron From: eBay e...@reply1.ebay.com To: r.pra...@sbcglobal.net Sent: Wednesday, October 9, 2013 5:51 PM Subject: RON, the latest smartphones are on eBay. WBR Shop the new iPhone, more top-brand phones, and accessories. _View this message in your browser_ (http://mail.ebay.com/r/mail/27bb64II73f45II18edfe08171II1) (http://rover.ebay.com/rover/4/0/8?eecl=1eesi=USi=18ecfbd1121II27bb64II73f45II18edfe08171II1eepc=bu=43200115069segname=B09E6 16-00crd=20131009132047emParams=isojTags=emid=bu,segname=segname,crd=crd) (http://rover.ebay.com/rover/4/0/8?eecl=1eesi=USi=18ecfbd1122II27bb64II73f45II18edfe08171II1eepc=bu=43200115069segname=B09E616-00c rd=20131009132047emParams=isojTags=emid=bu,segname=segname,crd=crd) (http://rover.ebay.com/rover/4/0/8?eecl=1eesi=USi=18ecfbd1123II27bb64II73f4 5II18edfe08171II1eepc=bu=43200115069segname=B09E616-00crd=20131009132047 emParams=isojTags=emid=bu,segname=segname,crd=crd) _Learn more_ (http://rover.ebay.com/rover/4/0/8?eecl=1eesi=USi=7f9e9db27II27bb64II73f45II18edfe08171II1eepc=bu=43200115069segname=B09E616-00crd=20 131009132047emParams=isojTags=emid=bu,segname=segname,crd=crd) to protect yourself from spoof (fake) e-mails. eBay Inc. sent this e-mail to you at r.pra...@sbcglobal.net because your Notification Preferences indicate that you want to receive general email promotions. If you do not wish to receive further communications like this, please _click here_ (http://rover.ebay.com/rover/4/0/8?eecl=1eesi=USi=7f9e9db2aII27bb64II73f45II18edfe08171II1eepc=/id=62545458627mailId=27bb64II73f45II18edfe0 8171II1bu=43200115069segname=B09E616-00crd=20131009132047emParams=isojT ags=emid=bu,segname=segname,crd=crd) to unsubscribe. Alternatively, you can change your Notification Preferences in My eBay by _clicking here_ (http://rover.ebay.com/rover/4/0/8?eecl=1eesi=USi=7f9e9db26II27bb64II73f45II18edf e08171II1eepc=bu=43200115069segname=B09E616-00crd=20131009132047emParam s=isojTags=emid=bu,segname=segname,crd=crd) . Please note that it may take up to 10 days to process your request. Visit our _Privacy Policy_ (http://rover.ebay.com/rover/4/0/8?eecl=1eesi=USi=7f9e9db28II27bb64II73f45II18edfe08171II1eepc=bu=43200115069segname=B09 E616-00crd=20131009132047emParams=isojTags=emid=bu,segname=segname,crd=cr d) and _User Agreement_ (http://rover.ebay.com/rover/4/0/8?eecl=1eesi=USi=7f9e9db29II27bb64II73f45II18edfe08171II1eepc=bu=43200115069segname=B09E6 16-00crd=20131009132047emParams=isojTags=emid=bu,segname=segname,crd=crd) if you have any questions. Copyright © 2013 eBay Inc. All Rights Reserved. Designated trademarks and brands are the property of their respective owners. eBay and the eBay logo are trademarks of eBay Inc. eBay Inc. is located at 2145 Hamilton Avenue, San Jose, CA 95125.
Re: [QUAD-L] I twisted an elastic
Congratulations. Bobbie! In a message dated 10/9/2013 8:33:07 P.M. Central Daylight Time, nlg52...@yahoo.com writes: WTG Bobbie! Only a quad could appreciate that accomplishment!! We are SO awesome! :) Nan On Wednesday, October 9, 2013 9:06 PM, Gmail bobbiehumphre...@gmail.com wrote: I can't believe what I just did! I had a 2 check books and a register that were elastic together. I rolled off the elastic, wrote my checks and asked Pete if he could please double the elastic around the checks .. he said just a minute. I hadn't tried in decades so I tried ... AND I DID IT! I doubled the elastic around the checks! Pete was not impressed but I just know you guys would understand and appreciate how difficult that feat is. Bobbie Smile Everyday
Re: [QUAD-L] Best Accessible Cities- New Mobility Magazine
I am surprised that Topeka is listed. That is our state capital, but I did not think of it as that accessible. Dana. You are so lucky that you don't know about snow. In a message dated 10/9/2013 5:48:54 P.M. Central Daylight Time, donpric...@yahoo.com writes: Not to knock any city or even this magazine, but I'm curious how any city that gets tons of snow can be in the top ten. I suppose they could have amazing access, you just can't get to it half the year. Clearly I'll need to read it for their judging criteria. :) PS. I grew up in WI and now live in AZ. I do know about snow. Don. On Wednesday, October 9, 2013 5:54 AM, wheelch...@aol.com wheelch...@aol.com wrote: This Month's issue of New Mobility Magazine lists the top 7 cites for Friendly Accessibility. 1. Seattle 2. Minneapolis 3. San Francisco Bay Area 4. Salt Lake City 5. Chicago 6. Topeka, Kansas 7. Boston For the details, check out Oct 2013 Issue. Also, is your bladder... botox friendly? Also, trying out Google Glasses Best Wishes
[QUAD-L] Re: TELL CONGRESS: Open the Government!
In a message dated 10/9/2013 3:02:36 P.M. Central Daylight Time, advoc...@easterseals.com writes: Dear Dana, We need your help again. Day 9 of the shutdown and there is no end in sight. There are no negotiations underway between the House and Senate on legislation to re-open the federal government. This stalemate must end TODAY. The shutdown is really bad, but if Congress doesn’t reach a deal before the debt ceiling deadline on October 17, the United States will default on its bills for the first time in our nation’s history. The consequences will be DIRE. Veterans won’t get their disability benefits, low income children won’t get supplemental food services, and the list will go on. So what can WE do? * TAKE ACTION: _Tell Congress to pass a clean spending bill to re-open the federal government and a bill to increase the debt limit before October 17th_ (http://capwiz.com/easterseals/utr/1/LOQITKCOQP/MBEKTKDJLY/9915551106) . Thank you, Katy Beh Neas Senior Vice President, Government Relations This message was sent to daa...@aol.com because you have supported Easter Seals or expressed interest in email from us. We respect your privacy and will not make your email address available to other organizations. If your Internet provider filters incoming email, please add easterseals.com to your list of approved senders to ensure you continue to receive email from Easter Seals. Thank you. _Update_ (http://capwiz.com/easterseals/mlm/signup/) your name, email address or other contact information. Easter Seals and its affiliates are 501(c)(3) nonprofit organizations. Easter Seals Headquarters, 233 South Wacker Drive, Suite 2400, Chicago, IL 60606 If you no longer wish to receive e-mail from us, please click _here_ (http://capwiz.com/easterseals/lmx/u/?jobid=230360951queueid=9915551106) .
Re: [QUAD-L] Suprapubic catheter question
You would need to go to a urologist and he would decide if you need a CT scan. As I said I was given three lithotripsy treatments to break the kidney stones. If they are not stopping the flow of urine, they might not do surgery. Every so often I get tiny pieces of kidney stones in my ileal conduit bag. I have a ileal conduit, because I have bladder cancer in my bladder was removed. I don't like to go under anesthetic unless I have to, because the likelihood of incubation. Dana In a message dated 10/9/2013 2:47:35 P.M. Central Daylight Time, da...@immortaldesigns.co writes: I don’t know if I have kidney stones… How can I find out or get a test approved by Medicare/Medical? From: Dana Wray [mailto:daa...@aol.com] Sent: Tuesday, October 08, 2013 10:52 PM To: da...@immortaldesigns.co Cc: quad-list@eskimo.com Subject: Re: [QUAD-L] Suprapubic catheter question I don't know if it works but I take an anabiotic every day for my urinary. I have that ileal conduit. I also take a probiotic called Proural everyday made by Farr Laboratories That my kidney doctor recommended a couple years ago. Do you have kidney stones or bladder stonesl I have two kidneys sounds but they are not hampering my urine flow.I Had 3 kidney lithotripsy, but it did not get rid of the stones. I sometimes get a teeny tiny stone in my ileal conduit bag. I don't Want to go under anesthetic for surgery. Dana Sent from my iPhone On Oct 8, 2013, at 2:35 PM, Danny Espinoza _Danny@ImmortalDesigns.co_ (mailto:da...@immortaldesigns.co) wrote: I had a a scare with autonomic dysreflexia earlier. My blood pressure was 200/111 with a heart rate of 43. Now I'm fine though at133/76 75 but still I'd rather not start my day that way. Luckily my nurse caught before something really bad happened!. My catheter stopped draining last month also... L Has anyone else had their catheter stop out of the blue even though your output is clear? What do you do to prevent it? I would hate to irrigate more often because I'm at the limit my insurance medi/medi covers. I drink crystal light also..
[QUAD-L] Re: Disability Rights Activists decry federal rules which promote institution...
In a message dated 9/19/2013 7:16:15 A.M. Central Daylight Time, bdarl...@cdrnys.org writes: There was apparently a problem with our PR distribution list. This didn't seem to go out. We will fix this problem ASAP. Bruce *** FOR IMMEDIATE RELEASE CONTACT: Bruce Darling, 585-370-6690 Bob Kafka, 512-431-4085 DISABILITY RIGHTS ACTIVISTS DECRY FEDERAL RULES WHICH PROMOTE INSTITUTIONALIZATION The national disability rights group, ADAPT, decried the release of federal rules finalizing changes to the Fair Labor Standards Act companionship exemption because the changes will result in the unwanted institutionalization of people with disabilities. No matter what kind of propaganda the Obama administration manufactures to promote these rules as a victory for attendants and people with disabilities, the reality is that these rules will be devastating for citizens with disabilities who rely on Medicaid-funded home and community-based services for more than 40 hours of assistance per week, said Bob Kafka, an organizer with ADAPT of Texas. For more than a year, disability rights organizations have repeatedly raised concerns that the proposed rules would result in the institutionalization of people with disabilities. In fact, these groups pointed out that the Department of Labor itself identified that institutionalization was an outcome of these rules multiple times in its own analysis of the proposed rules. ADAPT reviewed the proposed rules and identified a dozen ways they would result in unwanted institutionalization. In August, the disability community felt that Secretary of Labor Perez had understood their concerns and was planning to address them when he scheduled a listening session. Despite the fact that disability rights organizations had urge the Obama administration to rethink these rules which were developed without the involvement of the Disability Community, the rules were finalized with only minor wording changes. Instead of addressing our issues, Secretary Perez and the Department of Labor steam-rolled over our community, said Bruce Darling, an organizer with New York State ADAPT. The decisions were clearly already made. The entire listening session was a complete sham. Secretary Perez should be ashamed of himself and we intend to hold him accountable. ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom. More information about ADAPT and this issue can be found at www.adapt.orghttp://www.adapt.org/ and www.DOLoffMYbody.orghttp://www.doloffmybody.org/ NATIONAL ADAPT MAILING LIST - Adapt Community Choice Act List http://www.adapt.org
[QUAD-L] Re: Companionship rules are out
In a message dated 9/17/2013 12:54:49 P.M. Central Daylight Time, bdarl...@cdrnys.org writes: Here's a link to a website where you can access the rules. http://www.dol.gov/whd/homecare/finalrule.htm My understanding is that the effective date is January 1, 2015 and at that time attendants employed by agencies and other third-party employers will be entitled to receive at least the federal minimum wage and overtime pay. We have been told that the rules may raise additional questions and answers will be provided through post-regulatory guidance. We are analyzing the rules now. More than ever, it is critical that the Secretary Perez and the entire Obama administration engage the disability community in the development of that guidance. There is no excuse now for failing to work with us and the administration should keep its campaign promise that our voice be the guiding voice in this debate. NOTHING ABOUT US WITHOUT US! Bruce ADAPT NATIONAL ADAPT MAILING LIST - Adapt Community Choice Act List http://www.adapt.org
Re: [QUAD-L] I'm 60 years old today
Thank you so much Diana, we are all in as quad world together. Dana In a message dated 9/14/2013 9:32:35 P.M. Central Daylight Time, diannal...@aol.com writes: Happy Birthday Dana! Hi quad list, Celebrating my 60 year old birthday today. My father and stepmom brought me dinner last night and my mom is bringing dinner tonight. Just another day and another larger number. How many of us are 60 and older? What is discrimination to know what your comments just because you're 65 Joan. Why would the agent making a difference to a survey? -Original Message- From: DAANOO daa...@aol.com To: quad-list quad-list@eskimo.com Sent: Sat, Sep 14, 2013 7:44 pm Subject: [QUAD-L] I'm 60 years old today Hi quad list, Celebrating my 60 year old birthday today. My father and stepmom brought me dinner last night and my mom is bringing dinner tonight. Just another day and another larger number. How many of us are 60 and older? What is discrimination to know what your comments just because you're 65 Joan. Why would the agent making a difference to a survey? Hope everyone is having a good day. Dana, C-4-5 complete, passenger in a motor vehicle accident in the 74, 39 years post, 60 years old, Prairie village Kansas. How many other quad list members are it, Kansas or close by. Just wondering. Dana
Re: [QUAD-L] I'm 60 years old today
Thank you Dan and Larry for your birthday wishes In a message dated 9/14/2013 7:51:53 P.M. Central Daylight Time, lwillis...@yahoo.com writes: Sounds like there is a bunch of us floating around that 60 mark. Maybe we should form our own group -- the codger quads! Larry W., age 61, 42 post Sent from my iPad Begin forwarded message: Resent-From: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) From: Danny Hearn _ddh247@sbcglobal.net_ (mailto:ddh...@sbcglobal.net) Date: September 14, 2013, 7:53:43 PM EDT To: _DAANOO@aol.com_ (mailto:daa...@aol.com) _DAANOO@aol.com_ (mailto:daa...@aol.com) , _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: Re: [QUAD-L] I'm 60 years old today Reply-To: Danny Hearn _ddh247@sbcglobal.net_ (mailto:ddh...@sbcglobal.net) Happy birthday Dana, I'm not far behind you either at 56 years old and 16 + of quad-life. Dan H.** From: _DAANOO@aol.com_ (mailto:daa...@aol.com) _DAANOO@aol.com_ (mailto:daa...@aol.com) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Saturday, September 14, 2013 6:44 PM Subject: [QUAD-L] I'm 60 years old today Hi quad list, Celebrating my 60 year old birthday today. My father and stepmom brought me dinner last night and my mom is bringing dinner tonight. Just another day and another larger number. How many of us are 60 and older? What is discrimination to know what your comments just because you're 65 Joan. Why would the agent making a difference to a survey? Hope everyone is having a good day. Dana, C-4-5 complete, passenger in a motor vehicle accident in the 74, 39 years post, 60 years old, Prairie village Kansas. How many other quad list members are it, Kansas or close by. Just wondering. Dana =
Re: [QUAD-L] I'm 60 years old today
Thank you Bobbie. We are close in age, many of us. Dana In a message dated 9/14/2013 6:48:07 P.M. Central Daylight Time, bobbiehumphre...@gmail.com writes: I'm right behind you at 57 until November when I turn 58.Bobbie Smile Everyday On Sep 14, 2013, at 7:44 PM, _DAANOO@aol.com_ (mailto:daa...@aol.com) wrote: Hi quad list, Celebrating my 60 year old birthday today. My father and stepmom brought me dinner last night and my mom is bringing dinner tonight. Just another day and another larger number. How many of us are 60 and older? What is discrimination to know what your comments just because you're 65 Joan. Why would the agent making a difference to a survey? Hope everyone is having a good day. Dana, C-4-5 complete, passenger in a motor vehicle accident in the 74, 39 years post, 60 years old, Prairie village Kansas. How many other quad list members are it, Kansas or close by. Just wondering. Dana
[QUAD-L] I'm 60 years old today
Hi quad list, Celebrating my 60 year old birthday today. My father and stepmom brought me dinner last night and my mom is bringing dinner tonight. Just another day and another larger number. How many of us are 60 and older? What is discrimination to know what your comments just because you're 65 Joan. Why would the agent making a difference to a survey? Hope everyone is having a good day. Dana, C-4-5 complete, passenger in a motor vehicle accident in the 74, 39 years post, 60 years old, Prairie village Kansas. How many other quad list members are it, Kansas or close by. Just wondering. Dana
[QUAD-L] Re: Action Alert: Tell Your Senator to Reauthorize the Rehabilitiation Act!
In a message dated 9/12/2013 1:01:57 P.M. Central Daylight Time, vh...@dynind.org writes: Tell Your Senator to Reauthorize the Rehabilitation Act Now! _ Take Action!_ (http://capwiz.com/rochestercdr/utr/1/GQACTIQJPW/INDJTIQJTR/9847517886) The Workforce Investment Act (WIA) of 2013, (Bill S. 1356) is part of the Rehabilitation Act and was passed out of the Senate Health, Education, Labor and Pension (HELP) Committee on July 31, 2013. WIA has not been reauthorized since 1998, even though Congress requires it to be reauthorized every five years. For those who are unfamiliar with this legislation, the Rehabilitation Act mandates how Centers for Independent Living (CILs) and Statewide Independent Councils (SILCs) operate. Disability advocates have worked tirelessly with Legislators to strengthen the language within the Rehabilitation Act. S.1356 contains significant changes to the Independent Living program, including the creation of an Independent Living Administration (ILA), which will be located within the Administration on Community Living. Reauthorizing the Rehabilitation Act has been a top priority for the National Council on Independent Living (NCIL). Additional information on S. 1356 can be found at (http://capwiz.com/rochestercdr/utr/1/GQACTIQJPW/KGAETIQJTS/9847517886) _http://capwiz.com/rochestercdr/go/RehabAct_ (http://capwiz.com/rochestercdr/utr/1/GQACTIQJPW/KUECTIQJTT/9847517886) . S. 1356 is your chance to join the efforts of countless people who created change in the past and continue to ensure that the laws of this land are equal and accessible for all! Let your Senators know that they should support WIA and how it would affect you! If you no longer wish to receive e-mail from us, please click _here_ (http://capwiz.com/rochestercdr/lmx/u/?jobid=229689664queueid=9847517886) .
Re: [QUAD-L] Driver license renewal
I had to turn in the price of all my equipment even know I do not drive so it would be covered in case of an accident. I was required to do so I am AAA and on Farm Bureau my insurance previously. Dana In a message dated 9/4/2013 12:42:09 P.M. Central Daylight Time, rollingl...@yahoo.com writes: I wanted to add that my insurance company is aware of the fact that I drive from my wheelchair and I have several modification to my van. They said all is covered under my normal rate of payment. When I had my accident they proved it by repairing my van instead of just writing it off as a salvage loss. Due to all the money spent on modifications my van is worth more than the regular van of the same year. They paid close to 6,000 in repairs to the front end. Allstate is my insurance. From: donald scott rollingl...@yahoo.com To: quad-list@eskimo.com quad-list@eskimo.com Sent: Wednesday, September 4, 2013 10:27 AM Subject: Re: [QUAD-L] Driver license renewal I'm in California and have had my license for about 7 years. I had a regular license before my injury and it expired years later. When I got a van I could drive I applied for a new license. They did make me go through a few extra steps like a driving evaluation from a hospital and a DMV interview. After getting the ok I took the regular written and drivers test and passed with a 100 on both test. Since then I have only been pulled over once for running a stop sign and the cop looked at me and said Have a good day and let me go. I have also been in one accident that was deemed not my fault. My insurance didn't screw me or raise my rates. All of my repairs were fixed and I pay a average insurance rate. My license does have a restriction on it that says I must drive with hand controls. That is my experience so far with driving. I too will be renewing my license this year and I'm not sure if it will automatically renew or if I'll be tested again. But for the independence it gives me I'll do what ever I need too. I hope this helped in some way. Best wishes, Donald C5-C6 23 years post From: wheelch...@aol.com wheelch...@aol.com To: r.pra...@sbcglobal.net; quad-list@eskimo.com Sent: Wednesday, September 4, 2013 9:59 AM Subject: Re: [QUAD-L] Driver license renewal Some States are allowed to use one's driver's license as a Federal ID, for example, for flying and voting. If you present your new driver's license without a restriction and its challenged. Your insurance company knows of your physical conditions and limitations, I hope. It could be most embarrassing, should your license be flagged after all these years. I hope for you the best. Best Wishes In a message dated 9/4/2013 10:37:18 A.M. Central Daylight Time, r.pra...@sbcglobal.net writes: Dont check any of those boxes. Its going to make you have to retake the drivers test, raise your insurance and make your life more difficult. Only a fool would open that pandoras box. No body cares if you use hand controls or have any of those troubles, its your driving record that counts..leave this alone. Ron Pracht From: Todd Daugherty todd.daughe...@gmail.com To: quad list quad-list@eskimo.com Sent: Wednesday, September 4, 2013 10:32 AM Subject: [QUAD-L] Driver license renewal I got my drivers license on my 16th birthday, just a regular class C with no restrictions. I was injured at 17, but never made any changes to my license, even for the years that I was using hand controls. Recently I went to change the address online and ran across this question... * Have you ever had seizures, fainting, heart trouble, hearing problems, musculoskeletal performance problems, or respiratory function problems? So my question is when I say yes to this, what do you all think this will trigger? Another driving test? Todd C-6inc
Re: [QUAD-L] Does anyone take amatiza?
$200, wow, that is a lot. How does it work different than Senna? Dana In a message dated 8/31/2013 9:20:35 P.M. Central Daylight Time, diannal...@aol.com writes: I tried it at 8mg but it really made my belly hurt w/o results so I didn't bother to increase. Dianna Yes, I take 48 mg night b4 the program at 8:30 am. I experimented with 8, 16 and 24 daily until I found what worked for me. I am taking heavy opiate dosages, and Amitiza works alone without any other suppliments. $200 month copay smarts tho. Sent from Billy Lang's iPad On Aug 29, 2013, at 19:17, _jume@comcast.net_ (mailto:jume9...@comcast.net) wrote: Does anyone take Amatiza? Does it work in one day or should I take my usual laxatives the night b4 a bowel care day? How much do you take? Meredith -Original Message- From: Billy Lang blan...@verizon.net To: jume jume9...@comcast.net Cc: quad-list quad-list@eskimo.com Sent: Sat, Aug 31, 2013 6:08 pm Subject: Re: [QUAD-L] Does anyone take amatiza? Yes, I take 48 mg night b4 the program at 8:30 am. I experimented with 8, 16 and 24 daily until I found what worked for me. I am taking heavy opiate dosages, and Amitiza works alone without any other suppliments. $200 month copay smarts tho. Sent from Billy Lang's iPad On Aug 29, 2013, at 19:17, _jume@comcast.net_ (mailto:jume9...@comcast.net) wrote: Does anyone take Amatiza? Does it work in one day or should I take my usual laxatives the night b4 a bowel care day? How much do you take? Meredith
Re: [QUAD-L] cancer
Hi Diana, I just asked the prayer group at my sister-in-law's church in Shawnee Mission, Kansas to pray for you. Thinking of you and praying for you. Dana In a message dated 8/11/2013 8:52:04 P.M. Central Daylight Time, diannal...@aol.com writes: thank you, i'll need them. Diana, you don't know me, but I want you to know that I'll be thinking of you and praying for you. Jude -Original Message- From: Heyjude48458 heyjude48...@aol.com To: diannal767 diannal...@aol.com Sent: Sun, Aug 11, 2013 12:15 pm Subject: Re: [QUAD-L] cancer Diana, you don't know me, but I want you to know that I'll be thinking of you and praying for you. Jude In a message dated 8/10/2013 9:48:59 P.M. Eastern Daylight Time, _diannal767@aol.com_ (mailto:diannal...@aol.com) writes: chemo every three weeks for 18 mos. then i'll go into the hospital to have my stem cells harvested an froze. put the healty ones back in. this deletes waiting for a bone marrow donor. this takes 3 mos to recover from. this type of cancer will come back and chemo will have no effect. a new medicine is being released from fda in dec. i'll be on that for the rest of my life. mantle cell lymphoma is very mean. I start chemo thurs, i'm buying 3 yrs. the most is 6. I guess it will have my g-daughter older. besides, no one knows what lay before them 3 to 6 yrs from now. dianna I am so sorry and of course will pray for you. What are they doing for you? -Original Message- From: jume _jume@comcast.net_ (mailto:jume9...@comcast.net) To: quad-list _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Fri, Aug 9, 2013 9:27 am Subject: Re: [QUAD-L] cancer I am so sorry and of course will pray for you. What are they doing for you? Meredith From: _wheelchair@aol.com_ (mailto:wheelch...@aol.com) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Cc: _diannal767@aol.com_ (mailto:diannal...@aol.com) Sent: Friday, August 9, 2013 5:17:42 AM Subject: [QUAD-L] cancer Dianna, I am so sorry to read this. I will forward this to the Quad List Best Wishes From: _diannal767@aol.com_ (mailto:diannal...@aol.com) To: _wheelchair@aol.com_ (mailto:wheelch...@aol.com) Sent: 8/8/2013 11:06:46 P.M. Central Daylight Time Subj: cancer I was recently diagnosed with Mantle Cell Lymphoma. This is a very aggressive cancer different from Lymphoma. When I write to the quad-list some of my mail comes back because of aol. Would you tell the list to let them know and prayers are needed. Thank you, Dianna
Re: [QUAD-L] cancer
Wow, I didn't know you can have so much chemotherapy. God will bless you and comfort you through all these trials and give you the strength to survive. If we trust in him and we all pray together. Dana In a message dated 8/10/2013 10:31:48 P.M. Central Daylight Time, jume9...@comcast.net writes: Wow, that is a lot of chemo, bless you girl. We are are praying for you. meredith From: diannal...@aol.com To: jume9...@comcast.net, quad-list@eskimo.com Sent: Saturday, August 10, 2013 6:48:46 PM Subject: Re: [QUAD-L] cancer chemo every three weeks for 18 mos. then i'll go into the hospital to have my stem cells harvested an froze. put the healty ones back in. this deletes waiting for a bone marrow donor. this takes 3 mos to recover from. this type of cancer will come back and chemo will have no effect. a new medicine is being released from fda in dec. i'll be on that for the rest of my life. mantle cell lymphoma is very mean. I start chemo thurs, i'm buying 3 yrs. the most is 6. I guess it will have my g-daughter older. besides, no one knows what lay before them 3 to 6 yrs from now. dianna I am so sorry and of course will pray for you. What are they doing for you? -Original Message- From: jume jume9...@comcast.net To: quad-list quad-list@eskimo.com Sent: Fri, Aug 9, 2013 9:27 am Subject: Re: [QUAD-L] cancer I am so sorry and of course will pray for you. What are they doing for you? Meredith From: _wheelchair@aol.com_ (mailto:wheelch...@aol.com) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Cc: _diannal767@aol.com_ (mailto:diannal...@aol.com) Sent: Friday, August 9, 2013 5:17:42 AM Subject: [QUAD-L] cancer Dianna, I am so sorry to read this. I will forward this to the Quad List Best Wishes From: _diannal767@aol.com_ (mailto:diannal...@aol.com) To: _wheelchair@aol.com_ (mailto:wheelch...@aol.com) Sent: 8/8/2013 11:06:46 P.M. Central Daylight Time Subj: cancer I was recently diagnosed with Mantle Cell Lymphoma. This is a very aggressive cancer different from Lymphoma. When I write to the quad-list some of my mail comes back because of aol. Would you tell the list to let them know and prayers are needed. Thank you, Dianna
Re: [QUAD-L] Roho custom cushion 39th anniversary
I have never gotten one I just have the quadtra Today was my 39th anniversary in the quad world!. Dana (39th anniversary, C4-5, tracheostomy button, 59-year-old female and I am in Facebook. In a message dated 7/27/2013 7:11:09 P.M. Central Daylight Time, bobbiehumphre...@gmail.com writes: Hi All, Has anybody ever gotten a custom Roho cushion? I'm getting one that has, in the Ishium area, a tear down area where a 2 high profile Roho channels down to 1 1/4 at the Ishium area . Or dose anybody have a direct contact number, and name, of someone I can talk to before I order and personally pay out-of-pocket for a $500 cushion? Bobbie Sent from my iPad
Re: [QUAD-L] Almost got my new chair today
If I don't feel my chair is right for my leg and feet, and I ask for another wheelchair seating to fix the problem. The company doesn't seem to understand the problems I face because my left leg was broken and the ball joint disintegrated. It causes my leg go in a upside down V positioning and causing further food drop on my lap side where my femur was broken. I think I need something specially made. Does anybody have an idea of how to get that done. Dana In a message dated 7/18/2013 10:05:47 P.M. Central Daylight Time, bobbiehumphre...@gmail.com writes: Hi All, Well, I tried out my new Quantum Edge. Actually the bace is a motion concept and the rest is a Quantum Edge because of the power headrest. The power headrest works off the joy stick, there is a setting to raise up the headrest and also to bring it as close to my head as I want or need it. It's sweet. The chair is a dream, I just LOVE it ... It fits perfect. I didn't take it home or sign for it because the arm rests didn't have the waterfall padding on the outside that I requested. Also, the shoe holders for the foot plates didn't come in yet. So, my supplier is going to deliver it to my home with the 2 issues fixed. He also needs to adjust the foot plates so the weight of my thighs are properly disturbed equally over my thighs and feet. And I might have him do a little more tweaking with the speeds and responses ... It just seems too jerky. I absolutely love, love the center wheel drive. I'm going back to Kessler's wheelchair clinic August 22nd as a follow-up to see if everything is OK, something they do with everybody. I asked the PT why she was handling the wheelchair clinic and not an OT and she said ... when I was going to school, I just kept getting drawn more and more toward the clients seating then PT, because you all spend your lives in your chairs and I wanted to make a difference. So I kept signing up for specialized seating and got certified. She's a sweetheart and is extremely through. The seating is all she dose for many years now. Bobbie Sent from my iPad
[QUAD-L] Re: Action Alert: Please CALL Senator Moran's Office NOW to and urge him to s...
In a message dated 7/11/2013 9:52:57 A.M. Central Daylight Time, bdarl...@cdrnys.org writes: TAKE ACTION NOW! CALL Senator Moran at (202) 224-6521. Tell the Senator's staff: I am calling to support Senator Johanns' amendment in the Appropriations Committee to the Department of Labor appropriation that would prevent the Department of Labor from finalizing, implementing or enforcing changes to the Companionship Exemption that would hurt people with disabilities and the workers who provide us with services and supports to live independently in the community! Please urge the Senator to support this amendment. BACKGROUND: The Department of Labor (DOL) has proposed changes in federal labor rules that will hurt people with disabilities and attendants who support our independence. These changes will most seriously impact people who have the most significant disabilities and rely on Medicaid services to live in the community and their attendants. In short, the proposed changes will: - Force seniors and people with disabilities into institutions; - Cut the take-home pay of attendants; - Reduce the attendant workforce; - Force people with disabilities to cut the hours of trusted attendants and bring strangers into their homes; and - Devastate consumer directed attendant programs. Many national disability organizations -- including ADAPT, the National Council on Independent Living (NCIL), and the National Council on Disability (NCD) -- have raised concerns about these proposed changes and urged the Department of Labor to work with the disability community to resolve them. Instead of acknowledging the issue and working with the Disability Community to resolve it, the Department of Labor has continued to push ahead with these changes. (You can learn more about this issue at _www.DOLoffMYbody.org_ (http://www.doloffmybody.org/) ) TODAY, Senator Johanns will be submitting an amendment to the Department of Labor's appropriation that prevents DOL from finalizing, implementing or enforcing these changes until concerns about the proposed rules have been addressed. SO PLEASE TAKE ACTION, call Senator Moran at (202) 224-6521 and tell the staff: I am calling to support Senator Johanns' amendment in the Appropriations Committee to the Department of Labor appropriation that would prevent the Department of Labor from finalizing, implementing or enforcing changes to the Companionship Exemption that would hurt people with disabilities and the workers who provide us with services and supports to live independently in the community! Please urge the Senator to support his amendment. AFTER YOU CALL... Share this alert with family and friends and urge them to call as well. Then email us back and share how your call went. Thank you! Bruce Darling ADAPT
Re: [QUAD-L] DREZ
Hi Don, Is this a procedure just done on on paraplegics. Dana In a message dated 7/7/2013 11:15:46 A.M. Central Daylight Time, rhvsh...@pacbell.net writes: Hi Don, I've know 4 people that have had the DREZ surgery--all of them had it done at Craig Rehab Hospital in Denver. All four of them are low (T12) para's and all four of them said it worked great! Craig has a dedicated site on DREZ as well as contact info to ask questions: http://www.craighospital.org/Left%2DNav/Craig%2DPrograms/Rehabilitative%2DNe urosurgery/Spinal%20Cord%20Injury%20Pain%20and%20Neurosurgery Bob V --- On Wed, 7/3/13, Don Price donpric...@yahoo.com wrote: From: Don Price donpric...@yahoo.com Subject: [QUAD-L] DREZ To: quadlist quad-list@eskimo.com Date: Wednesday, July 3, 2013, 9:18 AM Hello all, one of our members down in Tucson is researching a procedure called DREZ (dorsal root entry zone ) surgery if anybody knows of it or any type of alternative to be explored please contact me ASAP. Thanks everyone Happy 4th of July!
Re: [QUAD-L] Sweating
Hi Wheelchair, That is so true that sweating is usually a warning signal of a UTI or some kind of skin pressure that is happening to your body that you don't know about. I always check about UTI. I don't always get temperatures with UTIs. Dana In a message dated 7/4/2013 10:41:23 A.M. Central Daylight Time, wheelch...@aol.com writes: Sweating for some is quite normal. For others, it might be a sign of an internal infection that is forcing increased temperatures and sweats. Has your normal temperature increased ? Has your normal blood pressure increased? What's your record for UTI's? Best Wishes In a message dated 7/4/2013 10:32:07 A.M. Central Daylight Time, hosnialkha...@hotmail.com writes: Hi My Friends I Want To Ask You ... 1-What Cause Sweating For a Quadriplegic,When He Is In The Wheelchair ? 2-After How long You Start Sweating,When You Are In The Wheelchair ? 3-What's Your Advice - Solution - For It ? Thanks
[QUAD-L] Re: 35 States So Far and Growing
Governors of 35 states have filed suit against the Federal Government for imposing unlawful burdens upon them. It only takes 38 (of the 50) States to convene a Constitutional Convention. This will take less than thirty seconds to read. If you agree, please pass it on. This is an idea that we should address. For too long we have been too complacent about the workings of Congress. The latest is to exempt themselves from the Healthcare Reform that passed ... in all of its forms. Somehow, that doesn't seem logical. We do not have an elite that is above the law. I truly don't care if they are Democrat, Republican, Independent or whatever . The self-serving must stop. If each person that receives this will forward it on to 15 people, in three days, most people in The United States of America will have the message. This is one proposal that really should be passed around. Proposed 28th Amendment to the United States Constitution: Congress shall make no law that applies to the citizens of the United States that does not apply equally to the Senators and/or Representatives; and, Congress shall make no law that applies to the Senators and/or Representatives that does not apply equally to the citizens of the United States ... You are one of my 15 To love another person ... is to see the face of God. Marianne
Re: [QUAD-L] Shingles Vaccine
I just found out it is covered by insurance at age 60, but I don't think Medicare. I don't know why. Dana In a message dated 6/27/2013 7:32:27 P.M. Central Daylight Time, donpric...@yahoo.com writes: Anyone who has ever had chickenpox (which is probably everyone reading this) has the Shingles virus in them. Shingles symptoms appear in 30 to 50 percent of people who live to age 85, depending on whose stats you read, but don't usually appear until after age 65. I've never experienced shingles, except for the kind that go on your roof, but my Mom had them and said they were very painful. Don. From: Nan nlg52...@yahoo.com To: Gmail bobbiehumphre...@gmail.com; quad-list@eskimo.com quad-list@eskimo.com Sent: Thursday, June 27, 2013 3:12 PM Subject: Re: [QUAD-L] Shingles Vaccine I had the shingles about 2 years ago. It affected my left forehead, scalp, eyebrow, side of my nose and all around my eye. They sent me to an eye doc because shingles can get into the eye and wreck havoc. It was painful ... but they caught it quickly gave me some med which reduced the severity and some eye drops. I survived, but I don't want to get it again. I had asked my doc about the vaccine, but he told me you had to be 60 to receive it. I was 58 or 59 when I got it. The year I turned 60 I had a conversation w/ my doc about the vaccine. During our talk he asked why I wanted it since I'd already had shingles. I told him that I'd heard you can get it more than once. He paused, told me that he'd had it 3 times, and asked the nurse to get the vaccine - end of discussion! lol I believe in vaccines. I'm glad you're going to get the vaccine! From: Gmail bobbiehumphre...@gmail.com To: RONALD L PRACHT r.pra...@sbcglobal.net Cc: quad-list@eskimo.com quad-list@eskimo.com Sent: Thursday, June 27, 2013 4:02 PM Subject: Re: [QUAD-L] Shingles Vaccine The vaccine cuts your chance of getting shingles to 50% and it last as long or hurt as much. Side effects from getting the vaccine are, swelling at shot site (which is the back of your upper arm) redness or soreness at site and a slight headache. Bobbie Sent from my iPad On Jun 26, 2013, at 11:32 PM, RONALD L PRACHT _r.pracht@sbcglobal.net_ (mailto:r.pra...@sbcglobal.net) wrote: My mother is 64 abnd she got shingles last year. She sufferred from extreme pin and the doctor wouldnt give her any meds. i never knew about the effects of this but its bad. I hear if you have had chicken pox you can get shingles. i dont know a thing about the vaccine though. Ron Pracht From: Gmail _bobbiehumphreys7@gmail.com_ (mailto:bobbiehumphre...@gmail.com) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Wednesday, June 26, 2013 7:16 PM Subject: [QUAD-L] Shingles Vaccine Hi All, Has anybody revived the shingles vaccine? I'm planning on getting one within the week. Also, has anybody ever gotten Shingles? Bobbie Sent from my iPad
Re: [QUAD-L] 15 YEARS
Congratulations Nikki, sorry this anniversary is harder for you. Bobbie, I am so glad you're getting together with some friends. Mine is coming up on July 27, 39 years. Wow, 40 years and I know you were very young what you were injured! Nan, you have us all beat ! Thank you for the information about your shingles experience Nan. I just wrote my caseworker about that and she didn't think I could get it any sooner. I sent her your e-mail. We will see what she says. Dana, In a message dated 6/27/2013 7:14:06 P.M. Central Daylight Time, zo _ocrew1@windstream.net_ (mailto:ocr...@windstream.net) writes: My best friend since junior high came to visit and we went to lunch J Nice to have the distraction. It usually doesn’t bother me but for some reason I’ve been thinking about this one. I can’t imagine 25 more years! Nicki c5/6 diving accident “feet first always” From: Gmail [mailto:bobbiehumphre...@gmail.com] Sent: Thursday, June 27, 2013 6:40 PM To: nichole rohling Cc: quad-list@eskimo.com Subject: Re: [QUAD-L] 15 YEARS Congrats on Dealing with adversityDo you celebrate in any fashion? I just celebrated my 40th anniversary and I am having my third party on 7 July. I'm just getting together with some people that I haven't seen in a long time at a restaurant, sitting, talking, eating, laughing, enjoying life. Bobbie Sent from my iPad On Jun 27, 2013, at 6:31 PM, nichole rohling _zoocrew1@windstream.net_ (mailto:zoocr...@windstream.net) wrote: Can’t believe today is 15 years since my accident……….CrAzY! Nicki
Re: [QUAD-L] Sprinter
Hi Ron, I thought that is Sprinter use diesel fuel and was much more expensive than a full-size van. I don't have a dropped floor on my Chevrolet express. I had thought about getting a Sprinter Van. I wonder what kind of mileage they get? That was an awful experience for your friend. Isn't that horrible that Dodge will not service, and he had to drive two hours. Dana In a message dated 6/26/2013 10:34:18 P.M. Central Daylight Time, r.pra...@sbcglobal.net writes: The sprinter is easy to convert for wheelchair passenger due to its tall stance. no need for raised roof or dropped floor. Ron From: wheelch...@aol.com wheelch...@aol.com To: r.pra...@sbcglobal.net; quad-list@eskimo.com Sent: Wednesday, June 26, 2013 7:54 PM Subject: Re: [QUAD-L] Sprinter I like the Sprinter van. So easy to convert and back on the road for a rider unit. As a driver unit I have no knowledge. Not all Dodge Dealers are Sprinter Dealers. FreightLiner, also services those vans. Best Wishes In a message dated 6/26/2013 7:09:54 P.M. Central Daylight Time, r.pra...@sbcglobal.net writes: A guy I know at the YMCA bought one to replace his old Ford van. He paid over 50,000 for one with just a lift in it . He told me the turbo went out on two vacations and Dodge wont service the van. He has to drive two hours away to get warranty work done. Hes stuck with it now and is very unhappy. I believe he said the air conditioning went out to,. Ron From: RONALD L PRACHT r.pra...@sbcglobal.net To: TheBlueBox lsmith7...@gmail.com Sent: Wednesday, June 26, 2013 7:08 PM Subject: Re: [QUAD-L] Sprinter A guy I know at the YMCA bought one to replace his old Ford van. He paid over 50,000 for one with just a lift in it . He told me the turbo went out on two vacations and Dodge wont service the van. He has to drive two hours away to get warranty work done. Hes stuck with it now and is very unhappy. I believe he said the air conditioning went out to,. Ron From: TheBlueBox lsmith7...@gmail.com To: quad-list@eskimo.com Cc: TheBlueBox lsmith7...@gmail.com Sent: Wednesday, June 26, 2013 4:50 PM Subject: [QUAD-L] Sprinter Hello, Does anyone own or know someone who has a wheelchair accessible Mercedes-Benz sprinter? Lester
[QUAD-L] T from Dr. Oz to prevent Alzheimer's
I'm going to try this tonight. Dana Dr. Sanjay Gupta drinks a creamy cup of turmeric tea every night to help calm his nerves, but the benefits of this colorful drink don't end there: A recent study suggests that curcumin, a brain-boosting chemical in turmeric, could help slow the progression of Alzheimer's by helping hippocampal brain cells grow. Added to Recipes on Fri 12/14/2012 Ingredients 1 cup almond milk 1/2 tsp turmeric 1 tsp cinnamon 1 tsp honey 1/4 tsp ginger Directions Heat the almond milk in a microwave, stir in the spices and drizzle the honey on top. Enjoy!
[QUAD-L] Fwd: 6-13 SCI Webcast- Advances in Research for Recovery
From: ju...@bu.edu To: daa...@aol.com Sent: 6/3/2013 8:52:41 P.M. Central Daylight Time Subj: 6-13 SCI Webcast- Advances in Research for Recovery Don’t forget to register for the June 13th webcast! Knowledge in Motion SCI Webcast Series For individuals living with spinal cord injury, their caregivers, healthcare professionals New Advances in Research for Recovery after SCI Presented by Jeffrey D. Macklis, MD Harvard Stem Cell Institute Harvard University Harvard Medical School Lisa McKerracher, Ph.D. BioAxone BioSciences, Inc. Frank Reynolds InVivo Therapeutics Angus McQuilken Mass. Life Sciences Center Thursday, June 13, 2013 6:30-8:00 PM Eastern Time Register to attend _Free Online Webcast and Live Chat_ (http://www.us6.list-manage.com/track/click?u=d2abecee0caf6876e559a54ecid=d7edd4bc8de=905798e 3fb) (http://www.bu.edu/nerscic/webcast-reg/) or contact: Judi Zazula at _judiz@bu.edu_ (mailto:ju...@bu.edu) 617-638-7314 866-607-1804 (toll-free) Attendees will be able to: · Understand how the corticospinal nerve injury contributes to SCI disabilities, and how it might be repaired. · Understand what new treatment options based on biomaterials will be available for SCI patients in the near future. · Learn about the 10-year, $1-billion MA Life Sciences Initiative and its relevance to the SCI community. · Learn about the current state of drug development to treat SCI. ~ About this month’s speakers and their presentations: Jeffrey Macklis, MD, Harvard Stem Cell institute, Professor of Stem Cell and Regenerative Biology at Harvard University, and Professor of Neurology and Neurosurgery at Harvard Medical School, will discuss the basic neurons and circuitry that connect the brain to the spinal cord. He will talk about the kinds of nerve injuries that are central to loss of muscle strength in SCI. Repair, regeneration, and/or replacement of these neurons by developmental and stem cell biology might provide useful, real-world therapies for real people who have lost motor function and bowel/bladder control due to SCI. Dr. Macklis will highlight a brand new set of approaches that his lab is using to pursue this goal. Lisa McKerracher, PhD, Founder, BioAxone Biosciences, will present on some studies showing that neurons in the spinal cord have the capacity for regeneration and repair. She will also describe BioAxone’s efforts to develop a drug called Cethrin™. Cethrin is new therapeutic protein in Phase II clinical development for the treatment of acute spinal cord injury. It has shown exceptional promise in promoting motor recovery in quadriplegic patients. BioAxone Biosciences Inc. is a privately owned American Corporation with a focus on bringing drugs to market for unmet medical needs. Angus McQuilken, Vice President for Communications Marketing at the Massachusetts Life Sciences Center, will present on the investments being made by the Massachusetts Life Sciences Center that relate to SCI research and patient treatment. He will talk about the state’s 10-year, $1-billion Life Sciences Initiative and its relevance to the SCI community. The Massachusetts Life Sciences Center is a quasi-public agency of the Commonwealth of Massachusetts. The Center’s mission is to create jobs in the life sciences and support vital scientific research that will improve the human condition. Frank Reynolds, Co-Founder, InVivo Therapeutics, will talk about the relationship of biomaterials to SCI treatments. Whether minimizing secondary injury in the weeks after the primary injury, or supporting neuroplasticity during the patient’s recovery, biomaterial based interventions led by neuroscientists and chemical engineers from MIT are providing new ideas on how SCI patients will be treated in the near future. InVivo’s technologies integrate multiple strategies involving biomaterials, FDA approved drugs, growth factors, and human neural stem cells. Mr. Reynolds will discuss these technologies as well as their impact on SCI patients. ~ New England Regional Spinal Cord Injury Center _www.bu.edu/nerscic_ (http://www.us6.list-manage.com/track/click?u=d2abecee0caf6876e559a54ecid=e7cd86bfade=905798e3fb) Sent to daa...@aol.com — _why did I get this?_ (http://www.us6.list-manage1.com/about?u=d 2abecee0caf6876e559a54ecid=f318459fc7e=905798e3fbc=442d633474) _unsubscribe from this list_ (http://www.us6.list-manage2.com/unsubscribe?u=d2abecee0caf6876e559a54ecid=f318459fc7e=905798e3fbc=442d633474) | _update subscription preferences_ (http://www.us6.list-manage.com/profile?u=d2abecee0caf6876e559a54ecid=f318459fc7e=905798e3fb) New England Regional Spinal Cord Injury Center · BUMC · 715 Albany Street, T5W · Boston, MA 02118
Re: [QUAD-L] Quad list
I was having those same problems and I had to keep resubscribing. I had not gotten for more than a week. Dana In a message dated 5/28/2013 11:51:07 A.M. Central Daylight Time, wheelch...@aol.com writes: Anyone else with issues? Best Wishes In a message dated 5/28/2013 10:58:17 A.M. Central Daylight Time, blan...@verizon.net writes: Wheelchair, Is the quad-list still active? I haven't received any mail in quite some time. I even unsubscribed and subscribed with no results. Sent from Billy Lang's iPad
Re: [QUAD-L] The List
Sorry I did not see your initial post Theo. I used to have a seamstress from Greece and her accent was adorable. Are you on Facebook? Please friend me. Dana Wray C-4-5 quadriplegia, 38 years post, Prairie Village Kansas In a message dated 4/28/2013 10:26:43 A.M. Central Daylight Time, jume9...@comcast.net writes: Yes Greece does not look very wheelchair friendly, but oh so beautiful!! meredith From: Theo Kyparissis kypar...@hol.gr To: jume9...@comcast.net, list, quad quad-list@eskimo.com Sent: Sunday, April 28, 2013 6:54:13 AM Subject: RE: [QUAD-L] The List Hi Meredith, Life is getting more difficult for most people living in Greece including Quads. We used to get an allowance for an electric wheelchair, for a very basic wheelchair with no extras like tilting and that has now been cut in half and is expected to be cut even more. We receive no aid to buy an accessible van or for caregivers we have to pay for them out of our own pockets. Of course living in Athens presents its own challenges as most areas are not very accessible including almost all apartment buildings over 15 years old. Although I have to admit that there have been a lot of improvements made especially since the 2004 Olympic Games. Cheers Theo From: jume9...@comcast.net [mailto:jume9...@comcast.net] Sent: Sunday, April 28, 2013 3:34 To: kypar...@hol.gr; quad-list Subject: Re: [QUAD-L] The List What is like to live as a quad in Greece? Do you have a wheelchair accesible van, electric wheelchair and caregivers to help you out? Meredith From: Theo Kyparissis kypar...@hol.gr To: list, quad quad-list@eskimo.com Sent: Saturday, April 27, 2013 1:00:25 AM Subject: RE: [QUAD-L] The List Theo, C4/5, Injured while playing Rugby for my High School in Harare, Zimbabwe, 1980, Now living in Athens, Greece From: Patrick Kenneally [mailto:ber...@sbcglobal.net] Sent: Saturday, April 27, 2013 2:27 To: jume9...@comcast.net; quadlist; Don Price Subject: Re: [QUAD-L] The List Pat C6/7 diving accident, 1991 Grass Valley, California --- On Fri, 4/26/13, Don Price donpric...@yahoo.com wrote: From: Don Price donpric...@yahoo.com Subject: Re: [QUAD-L] The List To: jume9...@comcast.net jume9...@comcast.net, list, quad quad-list@eskimo.com Date: Friday, April 26, 2013, 12:54 PM Don c5/6, diving accident, 1982. Tempe, Arizona, USA From: jume9...@comcast.net jume9...@comcast.net To: list, quad quad-list@eskimo.com Sent: Friday, April 26, 2013 12:50 PM Subject: [QUAD-L] The List Meredith C5/6, diving accident 1981 Northern Cailfornia From: bobbie...@aol.com To: sbell...@cox.net, daa...@aol.com Cc: list, quad quad-list@eskimo.com Sent: Friday, April 26, 2013 12:40:18 PM Subject: Re: [QUAD-L] going to PT for crooked body Would all of you (if you want to) tell me, and other's on the list who are new, your name, level of injury, how injury happened, year of injury and what state you live in. Like below. Bobbie Humphreys - C-4,5,6,7 Motorcycle, 1973 New Jersey Smile Everyday -Original Message- From: shirley bell sbell...@cox.net To: Dana Wray daa...@aol.com Cc: quad-list quad-list@eskimo.com Sent: Thu, Apr 25, 2013 11:45 am Subject: Re: [QUAD-L] going to PT for crooked body Hi all, I am c/5/6 37 yrs. Best, Shirley Bell www.ShirleyBellDesigns.com - Original Message - From: Dana Wray To: jume9...@comcast.net Cc: quad-list Sent: Wednesday, April 24, 2013 8:47PM Subject: Re: [QUAD-L] going to PT for crooked body Hi Shirley, I don't remember Your level and how many years post your injury. Think we all feel like we have crooked back. I'll look forward to hearing about what can be done. Thank You, Dana Sent from my iPhone On Apr 24, 2013, at 2:32 PM, jume9...@comcast.net wrote: I didn't know they could do that, please let us know. Meredith From: Nan lt;nlg52...@yahoo.comgt; To:shirley bell lt;sbell...@cox.netgt;, quad-list@eskimo.com Sent: Wednesday, April 24, 2013 11:46:58 AM Subject: Re: [QUAD-L] going to PT for crooked body Please keep us posted, Shirley. I'm crooked too! Nan From:shirley bell lt;sbell...@cox.netgt; To:quad-list@eskimo.com Sent: Wednesday, April 24, 2013 12:17 PM Subject: [QUAD-L] going to PT for crooked body To all my fellow crooked comrades, I am goingto be getting some body work done by and advanced PT person. My first appointment is may 30 for eval. I will let you all know what happens and if it helps. Best, Shirley Bell www.ShirleyBellDesigns.com
Re: [QUAD-L] going to PT for crooked body
My body leans to the left also. My hip was broken by a caregiver doing range of motion and I could not get surgery because of my severe osteoporosis. The ball joint is partially disintegrated, so one leg is shorter. Does anybody else have that problem and if so what did they do to not fall over. The permobile salesman for United seating tried to adjust my side pad, but I'm still falling over and more pain. I would appreciate anybody else's ideas and what they've done for this problem. Dana. In a message dated 4/24/2013 9:16:59 P.M. Central Daylight Time, nlg52...@yahoo.com writes: Crooked as in can't sit up straight. I started listing to the left years ago. Now I have some scoliosis and the ribs on my left side have bent and they poke me all day. From: Danny Espinoza da...@immortaldesigns.co To: 'Nan' nlg52...@yahoo.com; 'shirley bell' sbell...@cox.net; quad-list@eskimo.com Sent: Wednesday, April 24, 2013 3:19 PM Subject: RE: [QUAD-L] going to PT for crooked body Crooked? What is crooked? From: Nan [mailto:nlg52...@yahoo.com] Sent: Wednesday, April 24, 2013 11:47 AM To: shirley bell; quad-list@eskimo.com Subject: Re: [QUAD-L] going to PT for crooked body Please keep us posted, Shirley. I'm crooked too! Nan From: shirley bell _sbell137@cox.net_ (mailto:sbell...@cox.net) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Wednesday, April 24, 2013 12:17 PM Subject: [QUAD-L] going to PT for crooked body To all my fellow crooked comrades, I am going to be getting some body work done by and advanced PT person. My first appointment is may 30 for eval. I will let you all know what happens and if it helps. Best, Shirley Bell _www.ShirleyBellDesigns.com_ (http://www.shirleybelldesigns.com/)
Re: [QUAD-L] new
Hi Nan, I think you have everyone beat in quad years. It will be 39 years this July and I am 60 in September. Dana I agree with you Joan 96 years is quite too long for me. In a message dated 4/21/2013 1:16:35 P.M. Central Daylight Time, poaj...@sbcglobal.net writes: Nan, you’ll have almost everyone be in quad years! I am not sure that I will live to see 45 years, nor am I sure that I’d want to. J That would make me 96 years old. Of course I did not expect to live this long with being such a high quad. My greatest fear is that every time I need some sort of surgery they will have to put me on a respirator again as my neck is not flexible enough to intubate me. Oh well, we’ll cross that bridge when we have to. Have a great day everyone lovely weather Joan From: Nan [mailto:nlg52...@yahoo.com] Sent: Sunday, April 21, 2013 10:28 AM To: lwillis...@yahoo.com; quad-list@eskimo.com Subject: Re: Fwd: [QUAD-L] new Hey ... I'm in your range - I'll be 61 in May too! What day is your birthday? Mine's the 23. :) I think I have you in quad years though. It will be 45 years in June. Nan From: _lwillis821@yahoo.com_ (mailto:lwillis...@yahoo.com) _lwillis821@yahoo.com_ (mailto:lwillis...@yahoo.com) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Friday, April 19, 2013 9:12 PM Subject: Fwd: [QUAD-L] new Aye, Eric, you are but a pup! I'll be 61 in May. Those teenage years really just seem like yesterday, though. A couple more folks on here are in my range. Sent from my iPad Begin forwarded message: Resent-From: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) From: Eric W Rudd _c5sci97@gmail.com_ (mailto:c5sc...@gmail.com) Date: April 19, 2013, 8:53:49 PM EDT To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: Re: Fwd: [QUAD-L] new Wow! I thought I was gaining a little bit of seniority around here. Age 42, 16 years post but then read I’m still a pup ;-p I was born in ‘71! Eric W Rudd _c5sci97@gmail.com_ (mailto:c5sc...@gmail.com) From: _lwillis821@yahoo.com_ (mailto:lwillis...@yahoo.com) Sent: Friday, April 19, 2013 6:40 PM To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: Fwd: [QUAD-L] new Greetings Steven! Welcome to the forum with the greatest collection of minds since Einstein met daVinci! All questions/comments accepted and many answers offered. Larry Willis, C5 since 1971 Sent from my iPad Begin forwarded message: Resent-From: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) From: _wheelchair@aol.com_ (mailto:wheelch...@aol.com) Date: April 19, 2013, 5:32:31 PM EDT To: _c1tetra@ymail.com_ (mailto:c1te...@ymail.com) , _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: Re: [QUAD-L] new Hiya Steven! Welcome to the group. It is quite diverse and I think you will enjoy. You may function similar to our host Jim Lubin with a C1 level. Have you read up on Jim? He uses Morse Code to operate his cursor. Again, Welcome Best Wishes In a message dated 4/19/2013 4:27:08 P.M. Central Daylight Time, _c1tetra@ymail.com_ (mailto:c1te...@ymail.com) writes: I have just joined the list. I have a damaged spinal cord at my brain stem C1. My head is braced, but I can move my head a little, other wise I have nothing. I live in Alberta Canada, I am looking forward to participating in the group. Steven
Re: [QUAD-L] Today the 17th is my 40th Anniversary!
Hi Blackwood, I don't think I am familiar with you. I could've missed you joining the list. Dana In a message dated 4/18/2013 8:00:21 A.M. Central Daylight Time, blackwood4...@yahoo.com writes: Congrats Bobbie! Coming up on 34yrs. myself, have a great time! From: lwillis...@yahoo.com lwillis...@yahoo.com To: quad-list@eskimo.com Sent: Wednesday, April 17, 2013 9:41 AM Subject: Fwd: [QUAD-L] Today the 17th is my 40th Anniversary! Congrats Bobbie. I know it has taken an enormous amount of courage and perseverance to reach this milestone. Here's hoping you have another 40 filled with health and happiness. God's blessing to you and Sweet Pete.:) Sent from my iPad Begin forwarded message: Resent-From: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) From: _bobbie299@aol.com_ (mailto:bobbie...@aol.com) Date: April 16, 2013, 10:41:19 PM EDT To: _Quad-list@eskimo.com_ (mailto:Quad-list@eskimo.com) Subject: [QUAD-L] Today the 17th is my 40th Anniversary! Hello FriendsEmail to my family to Ashia Saturday May 4th 4:30 Hello my friends, Well, I made it to 40 years! Can NOT believe it. I'm going out with family and friends to dinner to celebrate enduring coping against adversity not going completely insane, not dying twice and living to see 2 nieces born, 4 nephews born, 1 great niece and 3 great nephews. Experiencing some unbelievably hysterical situations or experiences for instance; within 2 years post my chair ad 2 fiats, so my sister still got me dressed on a gorgeous summer day and put me in a wheel barrel. She put a folded blanket on the bottom, sat me facing the handles and as a C,5,6,7 was able to stay safely balanced as we proceeded through the day which included going to a local bar where .… everybody knows your name. Needless to say we needed not pay for one drink. Went to my senior high school prom with a eye candy hunk of a man 5 years my senior whom I met on my 1 year anniversary. Lost my virginity that night, laughing the whole night long … which is a story in and of it's self. Went to college, lived on campus 4 years post. At 9 years post I met Pete, we just celebrated 30 years together. He is the love of my life AND my soul caretaker 24/7/365 (not recommended). I've learned to do needle point, crewel work, calligraphy, painting, write and pioneered the peer counseling program at Kessler. Camped cross country, 10,000 mile's in 1980 in my first van with my sister for 8 weeks. Bobbie - sill hanging in there
Re: [QUAD-L] Today the 17th is my 40th Anniversary!
Hi Blackwood, I don't think I am familiar with your e-mail address. Did you possibly join and I did not meet you? Welcome, Dana In a message dated 4/18/2013 8:00:21 A.M. Central Daylight Time, blackwood4...@yahoo.com writes: Congrats Bobbie! Coming up on 34yrs. myself, have a great time! From: lwillis...@yahoo.com lwillis...@yahoo.com To: quad-list@eskimo.com Sent: Wednesday, April 17, 2013 9:41 AM Subject: Fwd: [QUAD-L] Today the 17th is my 40th Anniversary! Congrats Bobbie. I know it has taken an enormous amount of courage and perseverance to reach this milestone. Here's hoping you have another 40 filled with health and happiness. God's blessing to you and Sweet Pete.:) Sent from my iPad Begin forwarded message: Resent-From: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) From: _bobbie299@aol.com_ (mailto:bobbie...@aol.com) Date: April 16, 2013, 10:41:19 PM EDT To: _Quad-list@eskimo.com_ (mailto:Quad-list@eskimo.com) Subject: [QUAD-L] Today the 17th is my 40th Anniversary! Hello FriendsEmail to my family to Ashia Saturday May 4th 4:30 Hello my friends, Well, I made it to 40 years! Can NOT believe it. I'm going out with family and friends to dinner to celebrate enduring coping against adversity not going completely insane, not dying twice and living to see 2 nieces born, 4 nephews born, 1 great niece and 3 great nephews. Experiencing some unbelievably hysterical situations or experiences for instance; within 2 years post my chair ad 2 fiats, so my sister still got me dressed on a gorgeous summer day and put me in a wheel barrel. She put a folded blanket on the bottom, sat me facing the handles and as a C,5,6,7 was able to stay safely balanced as we proceeded through the day which included going to a local bar where .… everybody knows your name. Needless to say we needed not pay for one drink. Went to my senior high school prom with a eye candy hunk of a man 5 years my senior whom I met on my 1 year anniversary. Lost my virginity that night, laughing the whole night long … which is a story in and of it's self. Went to college, lived on campus 4 years post. At 9 years post I met Pete, we just celebrated 30 years together. He is the love of my life AND my soul caretaker 24/7/365 (not recommended). I've learned to do needle point, crewel work, calligraphy, painting, write and pioneered the peer counseling program at Kessler. Camped cross country, 10,000 mile's in 1980 in my first van with my sister for 8 weeks. Bobbie - sill hanging in there
[QUAD-L] Re: People Before Pharmaceutical Profits
In a message dated 4/17/2013 12:26:19 P.M. Central Daylight Time, direc...@medicareadvocacy.org writes: CMA Action Alert People Before Pharmaceutical Profits _Info by Topic_ (http://org.salsalabs.com/dia/track.jsp?v=2c=OeDFOhtZWSuz7YEUlZuGgsDUq3nx3d6A) _Articles Alerts_ (http://org.salsalabs.com/dia/track.jsp?v=2c=fzG32OLczVBGqYmIqQOi6sDUq3nx3d6A) _Litigation_ (http://org.salsalabs.com/dia/track.jsp?v=2c=DVqzAQFkTtTiCdin5CujFcDUq3nx3d6A) _Take Action_ (http://org.salsalabs.com/dia/track.jsp?v=2c=ULoYT+n7EIsxasVRsot9WCZp0U0fPlgZ) _Donate_ (http://org.salsalabs.com/dia/track.jsp?v=2c=ZasgDTYqMeQnmbRYAKkRUsDUq3nx3d6A) _Newsroom_ (http://org.salsalabs.com/dia/track.jsp?v=2c=1wFRbgGEkFjn5NXwzgnBwCZp0U0fPlgZ) _About_ (http://org.salsalabs.com/dia/track.jsp?v=2c=ZDOHKYNsR7B25u5uzyNpLMDUq3nx3d6A) Dear Kathy, (http://org.salsalabs.com/dia/track.jsp?v=2c=qT24fZiGE6MQ2J44dnyuiyZp0U0fPlgZ) On April 16, 2013, the Medicare Drug Savings Act of 2013, was introduced by Senator Rockefeller of West Virginia. The Act would allow Medicare to strengthen its muscle by asking the pharmaceutical Industry to provide Medicare with reduced pricing on prescription drugs. I support _this commonsense approach_ (http://org.salsalabs.com/dia/track.jsp?v=2c=hvaEojKhrD54O8axsxq+cMDUq3nx3d6A) along with nearly 70% of Americans, across party lines. _Tell your Senators that you support this sensible proposal, too_ (http://org.salsalabs.com/dia/track.jsp?v=2c=QiCjeWDeOIT5Kei2QsoeTMDUq3nx3d6A) (http://org.salsalabs.com/dia/track.jsp?v=2c=YhdFxxOfcLkPAq0487xWE8DUq3nx3d6A) . At a time when Congress and other policymakers consider making drastic cuts to Medicare, supposedly to save money, this legislation is a real step forward that would save $141 billion over ten years. These savings would end sweetheart deals that brand-name drug companies have had since Congress created Part D in 2006. It’s a matter of priorities. The Medicare Drug Savings Act protects beneficiaries and strengthens Medicare for future generations, rather than spending public dollars on profits for private drug companies. Today, (http://org.salsalabs.com/dia/track.jsp?v=2c=BX3tupT1dyATDatFicUuEsDUq3nx3d6A) _contact your Senators_ (http://org.salsalabs.com/dia/track.jsp?v=2c=hczcDIqpuC8uheruj8Qq+MDUq3nx3d6A) and tell them to support the Medicare Drug Savings Act. Tell them to put People before Profits. Sincerely, Judith Stein You may _remove your address from our mailing lists_ (http://org.salsalabs.com/dia/track.jsp?v=2c=X7BR9DhRq66u/zLMJjR4DsDUq3nx3d6A) at any time. If you would like an address corrected, or would like to add an address, please contact _Matthew Shepard_ (mailto:mshep...@medicareadvocacy.org?subject=News Alert) . If you would like to receive a text-only version of this alert, please reply to this message with the subject text only. Matthew E. Shepard Communications Coordinator Center for Medicare Advocacy, Inc. PO Box 350 Willimantic, CT 06226 _mshepard@medicareadvocacy.org_ (mailto:mshep...@medicareadvocacy.org?subject=News Alert) (860) 456-7790 (860) 456-2614 (fax) _www.medicareadvocacy.org_ (http://org.salsalabs.com/dia/track.jsp?v=2c=98bET+A4gOzLtAei9w5V88DUq3nx3d6A) The information in this electronic communication is intended only for the use of the individual(s) or entity named above, and may be legally privileged and confidential under applicable law. If the recipient of this message is not the above-named intended recipient(s), you are hereby notified that any dissemination, copy or disclosure of this communication is strictly prohibited. If you have received this communication in error, please notify the sender above and purge the communication immediately without making any copy or distribution.Copyright © The Center for Medicare Advocacy, Inc. _www.medicareadvocacy.org_ (http://org.salsalabs.com/dia/track.jsp?v=2c=dbWdzK01am1xeXFPCLgMeMDUq3nx3d6A) (http://www.salsalabs.com/?email)
Re: [QUAD-L] Back Brace vs Molded Chair Back
I went to a seating clinic at a rehab center and after they made it, I wore an click cancel d it made marks on my bottom and I have to stay in bed for a week. I returned the mold the next day. I was disappointed, they wanted to refit me and make a new one but I declined and I have stuck with my Roho quantra high-profile. Sorry for the misspelling. Dana I had read about this in the new mobility magazine and they just happened to be coming to Kansas City. I don't know if that's the same kind that he was talking about. In a message dated 4/6/2013 9:04:29 P.M. Central Daylight Time, daa...@aol.com writes: Call the nurse line at Craig Hospital. Go to the website and you can find it. Hope they can tell you something. Dana Sent from my iPhone On Apr 6, 2013, at 7:15 PM, _jume@comcast.net_ (mailto:jume9...@comcast.net) wrote: I have never heard of them but maybe you should ask to speak to his clients? Please let us know if you purchase one how it is. Meredith From: greg _greg@eskimo.com_ (mailto:g...@eskimo.com) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Saturday, April 6, 2013 11:38:26 AM Subject: [QUAD-L] Back Brace vs Molded Chair Back I went to the chair repair shop yesterday to get my lateral supports fixed or find a new style. Mine come loose too often and I end up with a curved chest. It gets uncomfortable and my back and inside arms start to hurt. He suggested getting a new chair back, one molded to me. It's a heavy foam with a metal frame. It might be great, or it might be bad. My concerns are... Will it be strong enough to push my right ribs over enough to hold me straight up. The back wraps around your sides, so you do not need lateral supports, so I worry it will bother my inner and under arms. Plus, I've always had swing away lateral supports. So now I wont be able to move them to get transferred. Also, they are not cheap. I have a 20% co-pay, and there is no exchanges or refunds for custom work. If they work as hoped, I'd gladly pay for the whole thing. I've had nothing but trouble with these things ever since my back started to curve. Anyone have one of these backs? The repair guy said everyone loves them, but he is not the guy who makes them. I'll ask they guy who does, but hoped to hear from a user. My appointment is next month. Thanks, Greg =
Re: [QUAD-L] Another anniversary
It's great that we have each other to share with. I really appreciate this group so much. Thank you Jim, Dana In a message dated 4/6/2013 4:52:41 P.M. Central Daylight Time, sbell...@cox.net writes: Hi, I feel about the same. Mine is next month. It hits me hard at times, the memories are hard to take but yet I am grateful to. I admire every ones courage and positive outlook in this group, it is not easy to have at times, I know. Best, Shirley Bell _www.ShirleyBellDesigns.com_ (http://www.shirleybelldesigns.com/) - Original Message - From: _Quadius_ (mailto:quad...@gmail.com) To: _quad-list_ (mailto:quad-list@eskimo.com) Sent: Friday, April 05, 2013 7:18 PM Subject: [QUAD-L] Another anniversary I haven't been on here much lately, but I have seen several people commenting about their SCI injury date. Well, today, April 5, is my SCI injury anniversary. I used to dread this day, but now it really doesn't matter anymore. I choose to celebrate the good things in my life and therefore I usually go out to dinner and celebrate August 6, the first day I was able to breathe on my own without the aid of the ventilator. It's been 18 years now and while I am grayer, a little older looking (actually I look quite a bit older), I still look fondly on that day as if it was yesterday. I'll try to be on here more, but I can't make guarantees. Take care everyone, Quadius
[QUAD-L] Re: House Vote Today Could End Medicare
Please take action today and call your legislators about this important legislation that will strike coverage for the things we need. Dana In a message dated 3/20/2013 2:57:57 P.M. Central Daylight Time, direc...@medicareadvocacy.org writes: CMA Action Alert House Vote Today Could End Medicare - Act Now! _Info by Topic_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=LVNhMB5iPJYumW5fQiWW+LUxtiz6EHlL) _Articles Alerts_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=qpwgO+UmeisOgyoy8zdO/bUxtiz6EHlL) _Litigation_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=qoS1glJfFS4wiGXPzYggkbUxtiz6EHlL) _Take Action_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=x0wj89Tdpz0goUsJ6aRfn7Uxtiz6EHlL) _Donate_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=ULGSNQ+SxUi+4WGgYmG5mrUxtiz6EHlL) _Newsroom_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=XM8uIy/Fp0lg80BYhutD77Uxtiz6EHlL) _About_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=RTg8+TeHERn9Bi3VD2Qk37Uxtiz6EHlL) Dear Kathy, Today in Washington, Medicare is at the center of an all-out-war to slash and end t (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=+mUXcQFz3W9Xm7ZBQJ4moLUxtiz6EHlL) he program millions of American families rely on. Disguised as attempts to tackle our nation’s fiscal and deficit issues, politicians led by House Budget Committee Chair Paul Ryan have their sights on Medicare and won’t stop until this successful community program is dismantled. The House Republican Budget, also known as the Ryan Budget, will go to the floor of the House for a vote today. For the third year in a row, the Ryan Budget attempts to end Medicare's guarantee of reliable and affordable health coverage and replace it with a system of vouchers run by the private insurance industry – leaving beneficiaries on their own and with an extra $6,000 out of pocket each year. The Ryan Budget hurts seniors, veterans, women, people with disabilities and families. Meanwhile, the Ryan Budget asks nothing of pharmaceutical companies, which continue to receive windfall profits and sweetheart deals from Medicare – all subsidized by you, the taxpayer. This debate is about priorities. Paul Ryan and his colleagues have made theirs clear. Today, they need to hear clearly from you. _Call and email your Representative NOW and tell them you don't support the Ryan Budget!_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=HkgjZRg0KLYNtmZ2Laa8drUxtiz6EHlL) _Tell them_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=SWPqYrZOpW6Ja+mxWx03MbUxtiz6EHlL) your family can’t afford an extra $6,000. _Tell them_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=0bjFaZl9BeLxFcocu79VCLUxtiz6EHlL) not to entrust Medicare and your health care to the insurance industry. _Ask them:_ (http://salsa. democracyinaction.org/dia/track.jsp?v=2c=2QHfu1+s5qVFIvzYR5XBCLUxtiz6EHlL) Will they choose to protect seniors and disabled Americans or pharmaceutical companies? We’ll be working to protect Medicare more than ever in the days and months ahead. Join us now: Twitter: Use hashtags #PeopleB4Profits and #ProtectMedicare and tweet why Medicare is important to you! You may _remove your address from our mailing lists_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=a6lzmMUKHvhR4wNPJsZZrLUxtiz6EHlL) at any time. If you would like an address corrected, or would like to add an address, please contact _Matthew Shepard_ (mailto:mshep...@medicareadvocacy.org?subject=News Alert) . If you would like to receive a text-only version of this alert, please reply to this message with the subject text only. Matthew E. Shepard Communications Coordinator Center for Medicare Advocacy, Inc. PO Box 350 Willimantic, CT 06226 _mshepard@medicareadvocacy.org_ (mailto:mshep...@medicareadvocacy.org?subject=News Alert) (860) 456-7790 (860) 456-2614 (fax) _www.medicareadvocacy.org_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=L9JL3oJN3GSQpMi2CNZb6LUxtiz6EHlL) The information in this electronic communication is intended only for the use of the individual(s) or entity named above, and may be legally privileged and confidential under applicable law. If the recipient of this message is not the above-named intended recipient(s), you are hereby notified that any dissemination, copy or disclosure of this communication is strictly prohibited. If you have received this communication in error, please notify the sender above and purge the communication immediately without making any copy or distribution.Copyright © The Center for Medicare Advocacy, Inc. _www.medicareadvocacy.org_ (http://salsa.democracyinaction.org/dia/track.jsp?v=2c=XsvsqRorlPA7e6MT28lFb7Uxtiz6EHlL) (http://www.salsalabs.com/?email)
Re: [QUAD-L] My new chair was approved!
I'm happy for you Bobbie. I hope you make a video about the chair so we can see how it works for you. Dana Congrats Bobbie, I'm curious about the headrest, never knew they had that...please let us in on how well it works. Meredith From: bobbie...@aol.com To: quad-list@eskimo.com, cwalla...@verizon.net, lorilivin...@gmail.com Sent: Tuesday, March 19, 2013 6:06:21 PM Subject: [QUAD-L] My new chair was approved! Hi All, Today a nurse from my HMO came to evaluate me for approval or denie me for a Quantum Q center wheel drive (never had one before) chair. I was approved! Including a power headrest. Not the kind of power headrest that oporate's the chair's movements but a power headrest that I oporate from the joy stick where I can comande it to raise up into any position I desire and ten tuck away. It is a Motion Concept power headrest. My vendor said this will be the very first power headrest to be approved that they have done or have EVER known to be approved. There most likely will be wanting to do a short video of me demonstrating it and they will put it on their web site and YouTube … I'll keep you all posted. My turning radius will shrink down 18 because of the poor seating my chair now has and going to center wheel drive. I live in a 400 square foot apartment, so this is going to be a BIG deal. Also, this chair is going to be 3-4 lower and narrower. The chair I have now has been a complete nightmare ever since I sat in it because of the hight and width being WAY to big. There will be somethings I won't be able to reach but I will be able to get back under tables again. Bobbie Smile Everyday
Re: [QUAD-L] A Great Movie
It was a wonderful movie. I want to see it again also. Dana In a message dated 3/16/2013 12:58:18 A.M. Central Daylight Time, jlu...@eskimo.com writes: Great movie! Just saw it. On Thu, Mar 7, 2013 at 10:50 AM, Nan _nlg52352@yahoo.com_ (mailto:nlg52...@yahoo.com) wrote: Amazing movie! I'd like to see it again. Nan From: _lwillis821@yahoo.com_ (mailto:lwillis...@yahoo.com) _lwillis821@yahoo.com_ (mailto:lwillis...@yahoo.com) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Wednesday, March 6, 2013 2:47 PM Subject: [QUAD-L] A Great Movie If you guys haven't seen The Intouchables, make it a point to do so. It is great. It's about a wealthy man who becomes c3-4 quad in parasailing crash. He hires an angry young black man as his aide. The movie is about their relationship and how they are both changed. It is a French film with English subtitles. One of those funny, moving, sad films that touches you in many different ways. Sent from my iPad
Re: [QUAD-L] Disease hunting
Hi Joan, What a wonderful life you have made yourself. What an accomplishment to run a business and help two mentally challenged adults to help you and you help them. You are inspiration! I want to wish you a happy 74 T H birthday. You're a blessing to your family. Dana In a message dated 2/28/2013 4:30:34 P.M. Central Standard Time, jume9...@comcast.net writes: I was not bored, I found it interesting to get to know you better. You sound very happy and are an inspiration to all of us. Meredith From: Joan Anglin poaj...@sbcglobal.net To: Nan nlg52...@yahoo.com, bobbie...@aol.com, quad-list@eskimo.com Sent: Thursday, February 28, 2013 8:10:00 AM Subject: RE: [QUAD-L] Disease hunting Nan Your post about disease hunting hit the nail on the head for me. I have nowhere near the amount of years that you, Glenn, Bobbie and so many others have, and I certainly respect each and everyone's decision to treat their body the way they choose. However, I feel myself fortunate because I was 51 years old when I broke my neck, and I had had a very interesting life, not always easy as I had been a single parent for seven years with three children. We lived in Europe for 10 years and I finally decided to come back to America even though I really loved living in Europe where I was a professional dog trainer and had the chance to show dogs all over Europe. To my knowledge I was the first person to take an American born German shepherd to Germany and compete against some of the top dogs there. Heck, I was 21 and did not even think to question if they would allow us to do that-the power of being young :-). But I finally came to realize that my children were American and that I was depriving them of the chance to choose if they wanted to live in Europe or live in America. I don't regret my decision. When I broke my neck I was standing on scaffolding only 9 feet above the ground, stepped back and hit my head on one of the joist hangers that I had just installed in our new barn that we were building. It pushed my head forward so when I fell off and landed flat on my stomach my head pronated very sharply and I totally crushed C4. I knew immediately what had happened as I had two quad friends who were C5/6, and when I tried to move my arm nothing happened. Fast forward-Santa Clara was great and after several close calls they kicked me out as I was not making any significant progress with the advice to go home and enjoy what time I had left, possibly 12 to 15 years. Reno is known as the Biggest Little City In The World but it certainly did not then nor now have any support for quads unless you were a Vet. We had a physiatrist who specialized in SCI for about two years, but everyone else is sports medicine. So plain ordinary GPs have been my main doctors were treated me as if I were ordinary as I did not have many medical needs that were specifically SCI. I consciously made the choice of not using any medication that was not absolutely necessary and took an proactive part in my treatment. Yep, there were up's and downs, some very scary, but 22 1/2 years later and looking forward to my 74th birthday I am eager to see what the future holds. I still have a 24/7 day a week job helping to guide two mentally retarded adults to make the most of their life which really enhances my life also. I started a seedling growing business seven years ago which has grown to our raising about 2000 seedlings each year for sale, which we do here at the house and it has introduced me to so many fantastic people that I look forward to every spring to see what it will bring. It frustrates me that I can not be a normal grandma to my grandkids so I compensate by attending every single swim meet, gymnastics meet, middle school band (that's hard on the ears) and trying to be the one that they can c ome to an talk about whenever they want knowing that I will keep it a secret and then only with their permission talk to their parents if I feel that what they are doing could be a really bad choice. My daughter often has to remind the grandkids to tell their friends that I am in a wheelchair and cannot move below my shoulders, because to them I am just Grams. Hopefully I have taught many children that being in a wheelchair is only another way of living a full life. My grandchildren are from ages 32 to 3 and three great grandkids and believe me they help keep me on my toes. Do I regret? Of course I do, but I also regret some of the things that I did before I broke my neck. That's just life. I look forward eagerly too what each day will bring and have learned patience to accept whatever the day brings and to find something to make other people laugh because then I can laugh. Thanks for your post, and maybe I should put in the subject matter don't read unless you want to be
Re: [QUAD-L] Pressure sore explosion
Hi Meredith, I'm so sorry to hear about your sore. Have you gone to the would care department to be evaluated. What do you think caused it? That is always the question what is causing the red marks that turning to sores. I often have a hard time knowing if was my shoe, my splints on my chair. If only there was a magic solution. Our lives would be so much easier. I will pray that the antibiotic will keep it from going to the bone. That almost happened to me over the summer. I have you use a wound vacuum for two months after being hospitalized one month. Dana In a message dated 2/28/2013 4:38:18 P.M. Central Standard Time, jume9...@comcast.net writes: The doctor says my wound is deep and is concerned it could go to the bone and I don't want to go to the hospital so I am on antibiotics and I'm being very diligent. Learned my lesson. Meredith From: Nan nlg52...@yahoo.com To: jume9...@comcast.net Sent: Wednesday, February 27, 2013 8:31:57 PM Subject: Re: [QUAD-L] Pressure sore explosion WTG Meredith. Good luck! Nan From: jume9...@comcast.net jume9...@comcast.net To: quad-list quad-list@eskimo.com Sent: Wednesday, February 27, 2013 5:20 PM Subject: Re: [QUAD-L] Pressure sore explosion Thanks for your advice, I've got an appt. tomorrow morning. Meredith From: wheelch...@aol.com To: jume9...@comcast.net, quad-list@eskimo.com Sent: Wednesday, February 27, 2013 12:49:37 PM Subject: Re: [QUAD-L] Pressure sore explosion Depend on the sore, and its reason. Pressure sores should be clean and debreeded and bandaged. Infections, not treated properly can produce more negative effects. Best Wishes In a message dated 2/27/2013 2:40:40 P.M. Central Standard Time, jume9...@comcast.net writes: Hi all, I ignored my sore and it got bad overnight, my foot swelled up and the sore literally exploded with pus and blood ( my aide almost threw up) She squeezed the ick out and we soaked it in salt water and bandaged it up. Should I get some antibiotics? Can I just continue soaking? Thanks Meredith
Re: [QUAD-L] a question from my wife regarding family caregivers
This is a very important issue.spouses, girlfriends or boyfriends would appreciate having someone to talk to. I know when I went to meeting at independent living center in Kansas City. I remember there were several persons working at the independent living center that had able-bodied partners. We have a spinal cord Association that I'm sure would have someone in your same position. I have not been able to go to any other meeting. I watched the video about sexuality that was on Friday. You can go to the website and watch although I don't think it really dealt with spousal caregiver issues. It is through the national spinal cord injury Association. Something you would need to talk to another person in your same situation and level of injury. The University hospital might also have someone to talk to in their spinal cord unit. I would hope that they give more guidance than they did when I was injured in 1974 . I can imagine the strain that are injuries, put on our significant others and just are caregivers and families. The responsibility is enormous. I have two brothers and sisters but there's only one brother that will make himself available to help me when he can. The video talk about having more services regarding sexuality in California. The presenter was from New York.. Dana if you have a wife or husband in California are you able to get caregivers from the state. There's a caregiver forum at _www.sciwire.com_ (http://www.sciwire.com/) Reeve Foundation and United Spinal have services for caregivers/families On Feb 22, 2013, at 11:05 AM, Dave Krehbiel wrote: I was injured at the beach about five years ago, just before my 50th birthday. I am now a C4/C5 quad who is now living at home with the combination of insurance, Medicare, Medicaid, and care by my family. My accident was a life changing experience for me and for my family, especially for my wife. She has tried to find someone to talk to about her issues, but there are precious few people who understand what it is like to be a quadriplegic or to care for a quadriplegic. For example, since I have control of my shoulder muscles and biceps, people see my arms moving and don't understand the severity of my injury. Are there any family caregivers (preferably spouses) out there who would be available to have a chat by phone with my wife? Thanks, Dave Krehbiel (301) 924-4530 = In a message dated 2/23/2013 11:55:50 A.M. Central Standard Time, missl...@optonline.net writes: There's a caregiver forum at _www.sciwire.com_ (http://www.sciwire.com/) Reeve Foundation and United Spinal have services for caregivers/families On Feb 22, 2013, at 11:05 AM, Dave Krehbiel wrote: I was injured at the beach about five years ago, just before my 50th birthday. I am now a C4/C5 quad who is now living at home with the combination of insurance, Medicare, Medicaid, and care by my family. My accident was a life changing experience for me and for my family, especially for my wife. She has tried to find someone to talk to about her issues, but there are precious few people who understand what it is like to be a quadriplegic or to care for a quadriplegic. For example, since I have control of my shoulder muscles and biceps, people see my arms moving and don't understand the severity of my injury. Are there any family caregivers (preferably spouses) out there who would be available to have a chat by phone with my wife? Thanks, Dave Krehbiel (301) 924-4530 =
[QUAD-L] peanut butter oatmeal cookies with ricotta high in calcium low in fat
from Doctor Oz show Shaun T's Oatmeal and Peanut Butter Ricotta Cookies Tighten your thighs, one of your five most common problem areas, with this health recipe from Shaun T, creator of the Insanity Workout. Made with ricotta cheese, which is high in calcium, one serving is only 50 calories and 2.6 grams of fat – and a perfect midmorning snack that will tide you over until lunchtime. Target your other problem areas with Shaun T's printable Cheat Sheet. 2K+ Added to Recipes on Wed 02/20/2013 Ingredients Makes 5 cookies (1 serving) 1 tbsp natural peanut butter 1/4 cup old-fashioned oats 1/4 cup reduced-fat ricotta cheese 2 packets (or to taste) Stevia 1/4 tsp baking powder 1/2 tsp flaxseed 1 egg white Dash of cinnamon Directions Preheat oven to 350°F degrees. Line pan with parchment paper. Mix everything together with a fork, pressing to mash ricotta cheese. Spoon 5 cookies onto pan. Bake for 10-12 minutes or until tops of cookies start to brown.
Re: [QUAD-L] best way to check kidneys and bladder
I had three lithotripsy in 2012, but they did not remove my stones. They do cause UTIs which I get often. The antibiotic. I was given by the infectious disease Doctor to take daily has not stopped the UTIs. I think it's called Macrodantin, but I get the generic. Dana In a message dated 2/21/2013 1:39:06 P.M. Central Standard Time, _zoocrew1@windstream.net_ (mailto:zoocr...@windstream.net) writes: I had an IVP several years ago……….radiologist said I had a bladder stone then when they went in to blast it (cystoscopy) there wasn’t one! From: Nan [mailto:nlg52...@yahoo.com] Sent: Thursday, February 21, 2013 1:18 PM To: nichole rohling; _Quad-List@Eskimo_ (mailto:Quad-List@Eskimo) . Com Subject: Re: [QUAD-L] best way to check kidneys and bladder Sounds similar to an IVP. IVP used x-ray not CT ... may be obsolete by now. Good luck! Nan From: nichole rohling _zoocrew1@windstream.net_ (mailto:zoocr...@windstream.net) To: 'Nan' _nlg52352@yahoo.com_ (mailto:nlg52...@yahoo.com) ; _Quad-List@Eskimo_ (mailto:Quad-List@Eskimo) . Com _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Thursday, February 21, 2013 2:05 PM Subject: RE: [QUAD-L] best way to check kidneys and bladder Having a CT Scan w/ contrast and dye for kidneys / bladder on Tuesday Nicki From: Nan [mailto:nlg52...@yahoo.com] Sent: Thursday, February 21, 2013 12:40 PM To: Danny Hearn; _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: Re: [QUAD-L] best way to check kidneys and bladder I have a renal ultrasound every year - I just went yesterday. I used to have an IVP, but haven't had one in years. I think the renal ultrasound measures kidney/bladder function as well as finding stones. I'd ask for one if you're having pain and spasms. Good luck! Nan From: Danny Hearn _ddh247@sbcglobal.net_ (mailto:ddh...@sbcglobal.net) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Wednesday, February 20, 2013 12:37 PM Subject: [QUAD-L] best way to check kidneys and bladder Can any of you tell me the best way to get my kidneys and bladder checked? every few years my urologist takes a scope and checks my bladder for stones, I been having a lot more pain and spasms the last few months so i just want to check both if possible for any problems. Would I need to go into the hospital or how can they check those? thanks for any replies ! Dan H**
Re: [QUAD-L] BP
What is the recipe for a coffee enema? Have you ever used and where did you hear about? Dana In a message dated 2/20/2013 2:46:00 P.M. Central Standard Time, lwillis...@yahoo.com writes: A coffee enema wakes up your bowels and makes the poop percolate downward. Sent from my iPad Begin forwarded message: Resent-From: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) From: _diannal767@aol.com_ (mailto:diannal...@aol.com) Date: February 20, 2013, 12:19:01 PM EST To: _wheelchair@aol.com_ (mailto:wheelch...@aol.com) , _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Subject: Re: [QUAD-L] BP I've never heard of a coffee enema. The Go Lite is very brutal! Never again for me :-) dianna A prune juice cocktail or coffee enema will usually empty your bowel. Or a gallon of Go Lite, with water. Best Wishes -Original Message- From: wheelchair _wheelchair@aol.com_ (mailto:wheelch...@aol.com) To: jume _jume@comcast.net_ (mailto:jume9...@comcast.net) ; quad-list _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Tue, Feb 19, 2013 8:03 pm Subject: Re: [QUAD-L] BP A prune juice cocktail or coffee enema will usually empty your bowel. Or a gallon of Go Lite, with water. Best Wishes In a message dated 2/19/2013 6:53:55 P.M. Central Standard Time, _jume@comcast.net_ (mailto:jume9...@comcast.net) writes: Just wondering, what tests are taken to see if one is blocked up? I'm not really able to do a colonoscopy according to the Doc I spoke to. Meredith From: Billy Lang _blang33@verizon.net_ (mailto:blan...@verizon.net) To: _jume@comcast.net_ (mailto:jume9...@comcast.net) Cc: _quadriplegic@cox.net_ (mailto:quadriple...@cox.net) , quad-list _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Tuesday, February 19, 2013 3:15:23 PM Subject: Re: [QUAD-L] BP See ur Md. you need to see if ur blocked. Also, ask your Dr. About Amitiza. Pill form up to 4,8 or 24 mcg. I take monstrous amounts of opiates and the pills along with fiber keep me regular. You will need to experiment with dosages to find the right balance for you. Sent from Billy Lang's iPad On Feb 18, 2013, at 19:08, _jume@comcast.net_ (mailto:jume9...@comcast.net) wrote: Try 2 sennakots or milk of magnesia, eat fruit and lots of it, if you continue in pain go see the doctor. From: _quadriplegic@cox.net_ (mailto:quadriple...@cox.net) To: _quad-list@eskimo.com_ (mailto:quad-list@eskimo.com) Sent: Monday, February 18, 2013 1:27:16 PM Subject: [QUAD-L] BP The last 2 weeks I've had such stomach pains. I've been pooping rocks and nothing has helped. I've tried Miralax, softeners, etc. I don't want to use too much, that hurts just as much. I keep using it more often, but I've never had to drink Miralax more than 2 times in a week. Then I can go months without it. I'm on my like 6th dose in 2 weeks. I want to double over in pain. G
